Tysabri discussion July 16 - August 8

 
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agate
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PostPosted: Sun Jul 16, 2006 11:04 pm    Post subject: Tysabri discussion July 16 - August 8 Reply with quote

Here's a place to discuss Tysabri.

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PostPosted: Mon Jul 17, 2006 2:44 pm    Post subject: Re: MS TREATMENTS: TYSABRI Reply with quote Edit/Delete this post

I had one infusion of Tysabri before it was taken off the market. I'm considering it again.

At the moment, I'm on an every-other-day Copaxone shot while my liver heals from Rebif. So I'm coastin' along.

Anybody else want to talk about Tysabri?

Joy
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Snoopy



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PostPosted: Mon Jul 17, 2006 3:33 pm    Post subject: Reply with quote

Joy,

How did you feel with the one infusion you had? I am interested in what you have to say.

I have never been on any MS treatments...dx'd for 20 years so there wasn't any at that time.

My neuro gave me info on Tysabri (before it was pulled)and I have to say Tysabri sounded great.

However I do have my concerns about Tysabri and the possible risks involved, altho' just about every med even OTC has risks.

I would rather sit back and see how it does over the years...Nope, I'm not real big on making quick decisions sunny
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Matt



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PostPosted: Mon Jul 17, 2006 3:41 pm    Post subject: Reply with quote

I was going to go on Tysabri. There was going to be a short clinical trial testing safety of combining Betaseron with Tysabri. It got cancelled, of course.
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PostPosted: Mon Jul 17, 2006 8:45 pm    Post subject: Reply with quote Edit/Delete this post

Snoopy wrote:
Joy,

How did you feel with the one infusion you had? I am interested in what you have to say.

I have never been on any MS treatments...dx'd for 20 years so there wasn't any at that time.

My neuro gave me info on Tysabri (before it was pulled)and I have to say Tysabri sounded great.

However I do have my concerns about Tysabri and the possible risks involved, altho' just about every med even OTC has risks.

I would rather sit back and see how it does over the years...Nope, I'm not real big on making quick decisions sunny


I only had the one infusion. One odd thing happened, my left eye turned blood red during the infusion. My sister, who was with me, noticed it first. The nurse made a note of it. It didn't hurt at all.

I've had ON in that eye (both eyes but the left one first). The redness wasn't necessarily a bad thing though it was a bit scary at the time. I've wondered if it could've been a good thing goin' on.

I had the Tysabri headache they warn you about but it wasn't severe. An Advil smacked it down.

I wish I could say I had more energy or I saw symptom improvement but I wasn't on it long enough.

I think it's a prudent decision to wait though I may not. There are risks. While I have the time to think it over, I'm considering. Novantrone is also an option for me.

How are you doing on no therapy, Snoopy? I hope well.

XOXOX
Joy
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Snoopy



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PostPosted: Tue Jul 18, 2006 8:55 am    Post subject: Reply with quote

Joy,

I have done fine without the MS treatments, my neuro said he really doubted I could have done any better had I used them altho' I do have my problems with MS like anyone else.

I do try to keep up to date on treatments but I just don't believe they work as well as we are lead to believe.


[quote="squishybrain
I only had the one infusion. One odd thing happened, my left eye turned blood red during the infusion. My sister, who was with me, noticed it first. The nurse made a note of it. It didn't hurt at all.

I've had ON in that eye (both eyes but the left one first). The redness wasn't necessarily a bad thing though it was a bit scary at the time. I've wondered if it could've been a good thing goin' on.

I had the Tysabri headache they warn you about but it wasn't severe. An Advil smacked it down.

I wish I could say I had more energy or I saw symptom improvement but I wasn't on it long enough.

I think it's a prudent decision to wait though I may not. There are risks. While I have the time to think it over, I'm considering. Novantrone is also an option for me.

How are you doing on no therapy, Snoopy? I hope well.

XOXOX
Joy[/quote]
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PostPosted: Tue Jul 18, 2006 9:18 am    Post subject: Reply with quote Edit/Delete this post

Snoopy wrote:
Joy,

I have done fine without the MS treatments, my neuro said he really doubted I could have done any better had I used them altho' I do have my problems with MS like anyone else.

I do try to keep up to date on treatments but I just don't believe they work as well as we are lead to believe.




Snoopy,

Thank you for sharing. It's good to hear that you've done well enough without therapies.

It's always good to hear someone is doing well, therapy or no.

I think what may happen is that there are several different types of MS and the therapies work 100% to 0% depending, perhaps, on the type you have. Believe me I've thought about chunkin' the needles myself. In my case, though, I don't think I'd do as well without them. I have been without (inbetween ending one theraphy and beginning another)and my MS progresses.

I did worse on Rebif (progressionwise) than I do on Copaxone. Copaxone increases my spasticity to an almost intolerable level though.

So, I'm considering other therapies too.

Joy
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PostPosted: Thu Jul 27, 2006 9:20 am    Post subject: Reply with quote Edit/Delete this post

lady_express_44
Quote: Tysabri.

Quote:
There was some discussion that the reason that one wrongly dx MS'er died, while in the trials, was because she ultimately proved to not have MS (even though that was her dx for a long time).

It seems T might mess with people who don't actually prove to have MS, so I think I'd want to be SURE before I went down that path.


Joy's question:

Cherie, I haven't heard that this woman in the Tysabri trial died because she didn't have MS. I read that she died because she had PML and just happened not to have MS.

Would you please link me to this data?

Thank you

Joy


lady_express_44


Joy wrote:

Quote:
Cherie, I haven't heard that this woman in the Tysabri trial died because she didn't have MS. I read that she died because she had PML and just happened not to have MS.

Would you please link me to this data?

Thank you

Joy



Cherie replied
Quote:
Yes she was one of the three who came down with PML in the Tysabri trials. Two of the three were orginally believed to be PwMS, and the third had Crohns.

The fellow with Crohns died, as did a lady who had been originally dx with MS (and treated for years with Avonex). The third person (also a PwMS) was severely affected by PML, but lived.

When the information was first announced, about so many people in this trial getting this very rare brain disease, it threw an immediate scare into the medical community, (that was when they pulled the drug off the market). It was also frightening for the MS community, to learn that "two of our own" had contracted this disease during the trial.

It was later discovered that one of the PwMS (the lady who died) probably didn't have MS. Since then, you will often notice that when people talk about how many people with MS contracted PML, it will generally be quoted as one (the fellow who lived).

The difference between the "true" PwMS (who lived), and the "wrongly dx" PwMS (who died), is that the one who died probably didn't even have MS. Otherwise, they were both originally dx with MS, on Avonex, in the Tysabri trial, and contracted PML.

So, the presumption, at least at one time, was that the lady who was undx with MS, might have contracted PML because the "un-needed" drugs affected her immune system in a BAD way, i.e. the interferon and Tysabri both suppressed her immune system in a similar way (remember that long discussion with Mark and TecNowiz, Matt?) ... --> which was not necessary, since she didn't have MS --> so this may have caused the JC virus to become active.

They don't totally understand how/why the current drugs might work for our disease, or even what effect they really have on our immune system. However, since we are deemed to have an autoimmune disease, and the drugs are apparently modifying the immune system to our benefit, it stands to reason that a non-MS'er probably wouldn't "need" these changes to their immune system. So, perhaps using a immunomodulator (particularly those with similar immune suppression mechanisms - including the interferons and Tysabri) may cause those people (without MS) even more risk then what a PwMS might have . . .

We had a few discussions about this on BT, and I believe there attachments in the threads about this hypothesis. . . but unfortunately, BT is still down at the moment. Maybe when it comes back up, we can try to track down the thread again.

Cherie

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mmcc

[quote]
The family of the woman who died after taking Tysabri testified at the FDA hearing. They maintain that she did not have MS and there was a neurologist who stated that she did not have MS.

The neurologogist who stated that had not been her neurologist, but apparently had been retained by the woman's family after she died. It is very important to note that the family was also suing. I am not sure how certain everyone is that she did not have MS.

When a lawsuit is involved, I think you have to be wary of what you assume is true, although I think an autopsy can provide pretty definitive evidence of whether someone has MS or not.

It is also my understanding that how Tysabri works is at least as clear as the other drugs. It blocks certain T-cells from crossing the blood brain barrier. Since those are the T cells which are responsible for the attack on the myelin, they stop MS progression and presumably can allow for healing.

The problem is that a large percentage of the population has PML virus cells in the brain. The same T cells which attack the myelin are the ones which keep the PML virus from flaring up. If someone has too many of the correct T cells blocked from entering the brain, PML can result.

PML was virtually unheard of until AIDS. I think the number was 1 in a million people got it???? However, AIDS has produced a large number of severely immunocompromised people and the PML rate radically increased as a result.

Tysbari is being restricted to those with ACTIVE lesions as far as I know. That will create a big problem for many people with MS, since there are many of us without ACTIVE lesions who still have severe or rapidly progressing MS with no other options.

Many who were counting on Tysabri are about to be very disappointed.

This is one reason that the comments about named individuals and speculation about whether or not and why they may not be taking Tysabri made me so furious. Lets have a little compassion here - this is a whole lot more serious than idle gossip to a whole lot of MS sufferers.

Of course those with RR are most likely to have active lesions and those without RR least likely. Those who are not RR also have the fewest effective treatment options open to them.

One of the biggest problems is that MS drug testing is almost always on RR since they are the largest population of MSers and also the easiest to measure progression with. [quote]


Quote:
mmcc:
Tysbari is being restricted to those with ACTIVE lesions as far as I know. That will create a big problem for many people with MS, since there are many of us without ACTIVE lesions who still have severe or rapidly progressing MS with no other options.

Many who were counting on Tysabri are about to be very disappointed.

This is one reason that the comments about named individuals and speculation about whether or not and why they may not be taking Tysabri made me so furious. Lets have a little compassion here - this is a whole lot more serious than idle gossip to a whole lot of MS sufferers.



Cherie's reply:
Tysabri is currently restricted to those with relapsing forms of MS. However, we can be relapsing constantly, and not necessarily show any active lesions . . .

I'm not so sure why you are bringing up that previous conversation AGAIN (I thought we ended it on the previous thread). . . but it is my understanding that Tysabri, as a treatment choice, is still a "matter of discussion and decision" between an individual and their neuro - even if they don't have active lesions.

In "that" person's case, she has been "active-lesion-free" for many, many years, but even so, she had tried Tysabri for 1 ( - 3) months before it was pulled last year. She reported to have had HUGE success with the drug, (in spite of not having had active lesions in ages).

Her 'success' factor, especially with regard to a reduction in her quarterly relapses, was the reason she stated that Tysabri would be her drug of choice. (Active lesions wasn't a consideration at that point in time ...).

So, it would seem that Tysabri's effectiveness might not necessarily prove to be limited to those with only active lesions, and it is my understanding that a "necessity for no new lesions" is not in print/a mandatory requirement at this point anyway.

From my understanding, this is still a decision that a PwRMS and their neuro will discuss and decide on an individual basis.

Cherie

EDIT: Changed "without" to "with"[/qupte]


Joy

Quote:

Cherie and mmcc,

thanks for the recap on this issue. I knew there was a woman in the Tysabri trial who died from PML and they suspected she didn't even have MS after all was said and done.

How tragic.

We could move this to the Tysabri thread for those interested in talking about it and perhaps learning more.



agate
Quote:


If I remember right, the autopsy results for the woman who died but might not have had MS were inconclusive. The PML had taken over her body to the point where the pathologists couldn't determine whether she had MS or not.

I'll try moving this thread over to the MS discussion forum.


I moved this thread from Matt's "I have MS" thread to the Tysabri thread.

This is an important discussion to anyone considering Tysabri.

Joy
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PostPosted: Thu Jul 27, 2006 9:34 am    Post subject: Reply with quote Edit/Delete this post

mmcc's post:


lady_express_44 wrote:
Quote:

...I had heard that her autopsy results confirmed that she didn't have MS . . . but I wasn't aware of who's camp organized the autopsy. (I'll re-read it when BT comes back up because all the links were there).



Me too - I am not sure, but I think Agate is correct, that it is not crystal clear because of the PML.

I suspect this issue will not be finally resolved until the case goes to court and maybe not then.

What was interesting is that the family was not advocating that Tysabri not be used/re-issued. Their statement strictly dealt with the tragedy of their mother's death.

lady_express_44 wrote:
Quote:
If she did have MS, then there are two PwMS, who were in the Tysabri trials, who contracted PML. (Not one, as some people quote).



There were 3 people - 2 in the MS trials and on in the Chrohn's. If one of the two people in the MS trial turns out not to have had MS, then that might be why some people say one person. I think until it is PROVEN whether she had MS or not, I would count 2.

lady_express_44 wrote:
Quote:
Either way . . . considering Tysabri is meant to perform as an anti-inflammatory. . . then those with a questionable dx (not ever having shown active lesions) aren't likely to benefit from the mechanisms of this drug, and/or may in fact, not respond well to the drug.



Tysabri is not an anti-inflammatory. It works on the T cells. Drugs like steroids, which ARE anti-inflammatories actually can benefit people with different auto-immune diseases. Tysabri would only help those whose disease is caused by certain T- cells - MS and possible Chrohn's.

lady_express_44 wrote:
Quote:
Tysabri is currently restricted to those with relapsing forms of MS. However, we can be relapsing constantly, and not necessarily show any active lesions . . .



A lot of people with MS are listed as RR when they are not really so that their doctors can prescibe MS drugs which are only approved for RR.

And, of course, all of us can have MS symptoms and even be under attack without active lesions showing up on an MRI. That's what is so bad about the way Tysabri has been approved - a lot of people who really need the drug will not be allowed to take it unless their MRI happens to be given at a moment when active lesions are visible.

There are also people like me who technically qualify but are not RR. The wording was "relapsing" thankfully which would include "relapsing progressive," like me, but only if I hit the MRI jackpot!

There is something wierd about hoping for an MRI to show active lesions.......... but that is what those of us who want to take Tysabri have to do.

lady_express_44 wrote:
Quote:
I'm not so sure why you are bringing up that previous conversation AGAIN (I thought we ended it on the previous thread). . . but it is my understanding that Tysabri, as a treatment choice, is still a "matter of discussion and decision" between an individual and their neuro - even if they don't have active lesions.



No, apparently that is NOT the case - without active lesions I gather the decision will be taken away from the neuro and patient.

lady_express_44 wrote:
Quote:

In "that" person's case, she has been "active-lesion-free" for many, many years, but even so, she had tried Tysabri for 1 ( - 3) months before it was pulled last year. She reported to have had HUGE success with the drug, (in spite of not having had active lesions in ages).

Her 'success' factor, especially with regard to a reduction in her quarterly relapses, was the reason she stated that Tysabri would be her drug of choice. (Active lesions wasn't a consideration at that point in time ...).

So, it would seem that Tysabri's effectiveness might not necessarily prove to be limited to those with only active lesions, and it is my understanding that a "necessity for no new lesions" is not in print/a mandatory requirement at this point anyway.

From my understanding, this is still a decision that a PwRMS and their neuro will discuss and decide on an individual basis.



I think you are wrong about that. Apparently it IS in writing.

However, either way, please stop discussing this person. Don't you have any sense of compassion or privacy?

The person you are referring to wants Tysabri and has said so. Why she is not or cannot take it is NONE OF YOUR BUSINESS and should not be a subject of discussion here.

I want Tysabri but if for some reason I am not allowed to take it, I would expect compassion, not to be the subject of idle speculation and gossip, unless I CHOOSE to discuss the subject with everyone here.

Agate, I realize that this board has "no limits" on discussions or postings, but I wonder if you should consider modifying that.

Perhaps discussions about people who are not members here and who therefore are not able to reply or insist on some privacy should be deleted.


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lady_express_44



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PostPosted: Thu Jul 27, 2006 9:58 am    Post subject: Reply with quote

I have decided that I will no longer 'initiate' those conversations, and will only participate in those "private matter" discussions if they are brought up by someone else.

Then it's fair game in my mind.

Cherie
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PostPosted: Thu Jul 27, 2006 11:20 am    Post subject: Reply with quote

Just for the record, the person who was almost under discussion again here has been specifically invited to join this board. I haven't personally invited even half a dozen people here, but she is one of them.

I did this at the suggestion of a couple of people here. We agreed that this person should have a chance to know what was being said about her here and to tell her side if she wanted.

I don't believe she has joined yet but she might do so at any time.
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agate
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PostPosted: Thu Jul 27, 2006 11:31 am    Post subject: Reply with quote

Joy, thanks so much for moving the posts!

I'm posting a couple of articles about the woman who died of PML and who might or might not have really had MS. This one is from the Los Angeles Times for February 18, 2006:

NOTE: I've added the emphasis to one phrase in the article.

Quote:

Death Tied to Experimental MS Drug Stirs Debate

As Tysabri's makers seek to resume selling it, critics say a woman who died should not have taken it in the first place.

By Denise Gellene
Times Staff Writer

February 18, 2006

A year ago, Anita Louise Smith died from effects of Tysabri — a drug that was supposed to help her cope with multiple sclerosis.

Within days, drug makers yanked Tysabri off the market, devastating many people with multiple sclerosis who had hoped that the intravenous treatment would bring them relief.

Now, as makers of the drug prepare to seek approval to put Tysabri back on the market, some prominent neurologists contend that Smith shouldn't have been taking it to begin with — because, they say, she didn't have MS.

Smith's case dramatizes a new debate over how multiple sclerosis drugs are tested: In recent years, drug companies have been trying out medicines on people with mild symptoms or none at all at the time of treatment, several experts say, including some who, like Smith, might not have the disease. These trials broadened the market for MS drugs but, critics say, put patients who don't need powerful new medicines at risk.

Smith, 46, was taking the drug as part of a clinical trial that regulators had required when they granted Tysabri fast-track approval. Most of the 1,171 patients in her trial suffered no disabilities, according to Food and Drug Administration documents.

"People with no active disease — in other words, people who are doing fine — shouldn't be given an experimental drug with unknown risks," said Stanford University neurology professor Lawrence Steinman, a co-inventor of Tysabri who has previously spoken out about the drug's dangers.

This week, Steinman and another Stanford neurologist, Annette Langer-Gould, urged the FDA to tighten criteria for selecting patients in MS drug trials.

"We are concerned that not only were patients put at risk by Tysabri, but we feel that the risk was absolutely unnecessary to assume," they said in an e-mail to the agency.

Biogen Idec Inc. and Elan Corp. hope to win government permission as soon as next month to resume sales of Tysabri. They say that it is an effective treatment for multiple sclerosis and that the risks can be managed by carefully selecting and monitoring patients.

Biogen Idec spokeswoman Amy Brockelman said privacy requirements prevented the company from commenting on Smith's case. But all aspects of the Tysabri clinical trials were approved by the FDA and by oversight boards at the medical centers where the studies were conducted, she said.

FDA spokeswoman Susan Cruzan said the agency would not comment on matters regarding Tysabri before an advisory panel meets March 7 to discuss the drug's possible return to the market. This week the FDA allowed the companies to resume clinical trials in MS patients who had been receiving the drug, a step that would provide added information about the risks of Tysabri.

Experts see the drug as a potential boon in the battle against multiple sclerosis, a disease in which errant white blood cells destroy the coating that protects cells in the brain and spinal cord. About 400,000 Americans have the disease.

For most patients, the disease is marked by flare-ups and remissions. Many experience only minor symptoms, such as numbness or tingling. But though the disease is seldom fatal, about half of MS patients become disabled — such as comedian Richard Pryor, who was unable to speak, swallow or get out of bed unassisted in the years before his death late last year.

Though not a cure, Tysabri was designed to prevent or delay progression of the disease by blocking the white blood cells that damage the brain.

A once-monthly medicine, administered through an intravenous infusion in a doctor's office, Tysabri received fast-track approval in late 2004 — on condition that clinical trials continue — because the FDA deemed it a significant advance over existing treatments. Researchers in one study noted that Tysabri nearly doubled patients' chance of infection, although the overall risk was tiny.

Despite an annual price tag of $23,500, initial sales of Tysabri were strong. When the drug was withdrawn, 5,000 patients were taking it and 15,000 more were awaiting insurance verification and their first dose. The companies needed just 20,000 patients to break even on the drug.

Biogen Idec, based in Cambridge, Mass., and Elan, based in Dublin, Ireland, saw Tysabri as a potential blockbuster, and Wall Street expected sales to one day reach $3 billion. Now analysts are forecasting annual sales of as much as $1 billion should the drug return to the U.S. market and receive approval in Europe.

Questionable Diagnosis

Smith, who lived in Colorado Springs, Colo., was diagnosed with multiple sclerosis in 2000 after a bout of weakness in her right leg, followed by blurred vision — both common symptoms of MS.

Although the symptoms disappeared, she started taking injections of Avonex, another Biogen Idec drug for MS. Insurance covered some of the cost, but Smith still had to pay $1,000 a month, her husband, Walter, said.

Smith started taking Tysabri in 2002 in addition to Avonex as part of a clinical trial looking at how the drugs worked in combination, according to her husband and a product-liability lawsuit he has filed against the drug companies. Her motivation for entering the trial was largely financial, he said.

Smith's neurologist, Dr. Patricia Fodor of Colorado Springs, told the couple that as a clinical trial participant, she would receive Avonex free, he said.

"Dr. Fodor more or less said if you get on this study — this clinical trial — we will pay for all the Avonex you need," Walter Smith said. "She sent home some papers and Anita signed."

The couple, who operated a towing business, made "a decent living — it wasn't like we couldn't afford it," he said. But "it sounded good not to pay for it."

Although she sometimes became fatigued, Smith had enough energy to shop, play with her Dalmatians and vacation in Las Vegas with her daughter, now 26, and son, 22.

But her condition took an unexpected turn in November 2004. Writing and typing became difficult, and she had problems with speech. A month later, her right side became numb and she grew increasingly forgetful.

By mid-February she was admitted to a hospital, where tests showed Smith had developed progressive multifocal leukoencephalopathy, or PML — a disease now recognized as a possible side effect of Tysabri. Another MS patient, a San Francisco man participating in the same clinical trial as Smith, also developed PML; he survived but suffered severe disabilities.

Moved to a hospice near her home, Smith died Feb 24. Four days later Tysabri's makers pulled it off the market. In reaction, Biogen Idec's stock dropped 43% and Elan shares plunged 70%.

Fodor, the neurologist who had diagnosed Smith with multiple sclerosis, declined to discuss her former patient. "We have no comment on anything to do with Anita Smith or the Tysabri study," said Debbie DeBaun, Fodor's practice manager.

But a July report on the case in the New England Journal of Medicine led many experts to contend that Smith did not have MS.

Dr. Bette KleinschmidtDeMasters, lead author of the article, said in an interview that she had found no evidence of the disease during her postmortem examination of Smith, though it was possible that the PML had obliterated signs of MS.

Some neurologists, after reading the journal report, concluded that Smith was misdiagnosed. The fleeting symptoms she had first experienced may have been due only to fatigue.

"For me — and a lot of other MS experts — there is no doubt that at least this patient did not have MS," said Dr. Thomas Berger, head of neuroimmunology at Innsbruck Medical University in Austria. Berger and a colleague said in a letter to the New England Journal of Medicine that Smith did not appear to have MS.

Writing in the British Medical Journal this week, Dr. Abhijit Chaudhuri, a London neurologist who conducted one of the earliest clinical tests of Tysabri, called Smith's diagnosis "questionable." He also called for stricter enrollment criteria for clinical trials and said independent reviewers should monitor patient selection.

Walter Smith's lawsuit against the two drug companies contends that his wife did not belong in the trial and that the companies failed to confirm that she had multiple sclerosis. In court documents, the companies contend that Smith's doctor was responsible for selecting her for the trial and for warning her about the risks.

At the root of the question is how patients are selected for multiple sclerosis drug trials. A decade or so ago, experimental MS drugs were tested in sicker patients. Those with no current symptoms — with normal eye movement, coordination and sensation — were not selected.

The practice changed in recent years as more neurologists began treating patients at the first sign of disease, hoping to slow its course.

Harvard Medical School neurology professor Dr. David A. Hafler, an expert on MS, said risks are an unavoidable part of drug research and that it was reasonable to test Tysabri in patients with mild as well as somewhat advanced cases of MS. "All drugs work better when used early on," he said.

Recruitment Factor


Dr. Howard L. Weiner, also an MS expert at Harvard Medical School, said it was appropriate to enroll patients with no current physical symptoms in clinical trials if an MRI confirmed that disease was causing damage.

He cited a practical reason for including patients with mild as well as more advanced disease in trials: A broad patient group makes recruitment into trials easier, he said, saving time and money.

But other neurologists were critical of current practice.

Stanford University's Langer-Gould said Biogen Idec helped lead the push toward earlier treatment with a study six years ago of Avonex in patients who didn't meet the clinical definition of MS that was in effect at the time. Although the trial, which showed that Avonex could delay relapses, benefited patients because it led to earlier treatment, it also benefited Biogen Idec by expanding the market for Avonex, she said.

Langer-Gould said the Avonex study didn't raise concerns because the drug was already on the market and considered safe. But she worries that patients with mild cases of MS face potentially greater risks from an experimental drug than from their illness.

"What was the rush to treat these patients?" she asked.

Chaudhuri, the London neurologist, shares her concern. "Patients with mild MS and who are fairly stable generally don't get that bad," he said. "Why on Earth would you go into a treatment trial with the possibility of side effects and complications when you don't expect to get much worse?"





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Matt



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PostPosted: Thu Jul 27, 2006 11:47 am    Post subject: Reply with quote

agate wrote:
Just for the record, the person who was almost under discussion again here has been specifically invited to join this board. I haven't personally invited even half a dozen people here, but she is one of them.

I did this at the suggestion of a couple of people here. We agreed that this person should have a chance to know what was being said about her here and to tell her side if she wanted.

I don't believe she has joined yet but she might do so at any time.


GOOD JUDGEMENT. I had thought of doing that myself at one point.
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PostPosted: Thu Jul 27, 2006 12:07 pm    Post subject: Reply with quote

COOL . . .

And I'm assuming she will be introducing herself, as herself then ...?

Finally, an open discussion (when/if necessary) without moderator interference!

Good plan, Agate.

Cherie
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PostPosted: Thu Jul 27, 2006 12:12 pm    Post subject: Reply with quote

Case history of this patient as it appeared in the New England Journal of Medicine:

Quote:
Progressive Multifocal Leukoencephalopathy
Complicating Treatment with Natalizumab
and Interferon Beta-1a for Multiple Sclerosis


B.K. Kleinschmidt-DeMasters, M.D., and Kenneth L. Tyler, M.D.
From the Departments of Pathology
(B.K.K.-D.), Neurology (B.K.K.-D., K.L.T.),
Neurosurgery (B.K.K.-D.), Medicine (K.L.T.),
Microbiology (K.L.T.), and Immunology
(K.L.T.), University of Colorado Health
Sciences Center; and the Denver Veterans
Affairs Medical Center (K.L.T.) — both in
Denver. Address reprint requests to Dr.
Kleinschmidt-DeMasters at the Department
of Pathology, B-216, University of
Colorado Health Sciences Center, 4200
E. 9th Ave., Denver, CO 80262.

N Engl J Med 2005;353.

A 46-year-old woman with relapsing–remitting multiple sclerosis died from progressive multifocal leukoencephalopathy (PML) after having received 37 doses of natalizumab (300 mg every four weeks) as part of a clinical trial of natalizumab and interferon beta-1a. PML was diagnosed on the basis of the finding of JC viral DNA in cerebrospinal
fluid on polymerase-chain-reaction assay and was confirmed at autopsy. Nearly every tissue section from bilateral cerebral hemispheres contained either macroscopic or microscopic PML lesions. There was extensive tissue destruction and cavitation in the left frontoparietal area, large numbers of bizarre astrocytes, and inclusion-bearing oligodendrocytes, which were positive for JC virus DNA on in situ hybridization.

Progressive multifocal leukoencephalopathy (pml), a demyelinating disease of the central nervous system (CNS), is associated with high rates of morbidity and mortality and occurs almost exclusively in immunocompromised patients. 1

We describe a patient with multiple sclerosis who died of PML after receiving natalizumab (Tysabri, Biogen Idec) as part of a clinical trial conducted to test the safety and efficacy of natalizumab in combination with interferon beta-1a (Avonex, Biogen Idec) in the treatment of relapsing–remitting multiple sclerosis. To our knowledge,
there have been no prior reports of the concomitant association of multiple sclerosis and PML.

Natalizumab is a humanized monoclonal antibody against alpha4 integrins that was recently introduced for the treatment of multiple sclerosis. The drug was withdrawn from the market after reports of the development of PML in two patients with multiple sclerosis who were receiving natalizumab and interferon beta-1a in clinical trials.

An additional case of PML, in a patient receiving natalizumab for the treatment of Crohn’s disease,
is described elsewhere in this issue of the Journal.2


A 41-year-old, right-handed woman began to have numbness and burning pain in her right foot and leg and tingling numbness and clumsiness in her right hand in June 1999. She had a history of migraine and transient numbness of the left hand. A neurologic examination revealed increased tone on her right side and generalized hyperreflexia (3+) with normal plantar responses.

In September 1999, magnetic resonance imaging (MRI)
with contrast medium showed four small, nonenhancing foci of increased signal in the corona radiata bilaterally on the fluid-attenuated inversion recovery (FLAIR)sequences.Electromyography and nerve-conduction studies showed no abnormalities.

Six weeks later, her leg symptoms had
improved, but the patient reported new visual blurring in her right eye. The visual acuity of the right eye was 20/100, and that of the left was 20/15. Examination of cerebrospinal fluid in November 1999 showed 1 white cell per cubic millimeter, 55 mg of protein per deciliter, and normal values for glucose (64 mg per deciliter [3.6 mmol per liter]), IgG (3.2 mg per deciliter), the IgG index (0.57), and the IgGsynthesis rate (0.3 mg per 24 hours). No oligoclonal bands were detected in a specimen of cerebrospinal fluid that was concentrated by a factor of 80. Levels
of vitamin B12 and folate were normal, tests for antinuclear antibodies and anticentromere antibodies were negative, and thyroid-function tests were normal. A complete blood count was also normal, except for mild leukocytosis (11,200 cells per cubic millimeter).

In January 2000, MRI showed two new nonenhancing
parietal lesions with increased FLAIR signal
and decreased T1-weighted signal.

In February 2000, the patient reported that her vision was normal and that her right-sided numbness had nearly resolved. She began receiving 30 μg of interferon beta-1a intramuscularly each week, tizanidine, calcium, magnesium, and vitamins B, C, and E for presumed multiple sclerosis.

In May 2000, she began taking tamsulosin for difficulty with bladder emptying and citalopram for depression.

In March 2001, the patient noted worsening vision,
band-like paresthesias around her back and
abdomen, and increasing weakness and spasticity
of her legs. The strength of both legs was mildly decreased (4+/5), and her gait was slightly spastic, although her deep tendon reflexes were normal. She received 500 mg of methylprednisolone twice daily intravenously for five days (March 16 through 20, 2001) for a suspected exacerbation of multiple sclerosis.

In September 2001, she reported some decline
in fine motor skills in her hands and worsening
spasticity in her legs as well as some decline in
cognition, including short-term memory, and began
taking donepezil. She had a score of 2.5 on the
Kurtzke Expanded Disability Status Scale (EDSS) in
March 2002 (range of scores, 0 to 10, with higher
scores indicating a greater degree of disability).

In April 2002, the patient was enrolled in a randomized, placebo-controlled, parallel-group, multicenter study designed to determine the safety and efficacy of natalizumab combined with interferon beta-1a in patients with relapsing–remitting multiple sclerosis (the Biogen Idec and Elan SENTINEL trial).

At the time of her enrollment, T2-weighted MRI showed approximately nine lesions
and her EDSS score was 0. She continued to
take 30 μg of interferon beta-1a intramuscularly
weekly throughout the study. Additional medications
at study entry included citalopram, rofecoxib,
and tramadol in combination with acetaminophen.

During the study, the patient received a total of
30 doses of natalizumab (300 mg, or approximately
6 mg per kilogram of body weight, each) by intravenous infusion at four-week intervals between
April 12, 2002, and July 9, 2004. She also received
tizanidine, donepezil, and briefly, galantamine.

In July 2004, she was enrolled in an open-label extension study (Biogen Idec/Elan 1808) and received seven additional 300-mg doses of natalizumab at four-week intervals, with the last dose given on January 18, 2005. No antibodies developed against either interferon beta-1a or natalizumab.

Pharmacokinetic studies showed that the clearance of natalizumab in the patient (0.0136 liter per hour) was similar to the median value in the study population (0.0138 liter per hour). A follow-up T2-weighted MRI study in April 2003 showed five new or enlarging lesions.

A similar study in April 2004 showed one new or enlarging lesion. No enhancing lesions
were noted. Unfortunately, these MRI scans were
not available for review, and the reports specified
only the number of lesions, not the location. No
clinical or suspected relapses of multiple sclerosis were identified, and the patient’s EDSS score remained between 0 and 2 through July 2004.

In November 2004, the patient reported new
problems with hand–eye coordination, including
difficulty writing and typing, as well as problems
with her speech. A mental-status examination performed at that time showed a decreased fund of information, minor errors on a drawing of a three-dimensional cube and on tests of mathematical
skills, and reduced immediate recall on a word-learning test. Her cranial nerves were normal. Her
strength was intact, but she had mildly increased
tone in her legs and hyperactive (3+) reflexes bilaterally.

In December 2004, right-sided numbness
developed and word-finding difficulty increased.
The patient had difficulty carrying on a conversation and became increasingly forgetful. A neurologic examination revealed difficulty with expressive speech, with preserved comprehension, some right–left confusion, irregular saccadic eye movements, and increased tone on her right side. She received methylprednisolone (500 mg intravenously twice daily) from December 15 through 19, 2004.

An MRI study performed on December 15 showed a large area of increased T2-weighted and decreased T1-weighted signal in the left frontal lobe posteriorly involving the subcortical white matter and extending into the centrum semiovale and corona radiata, without enhancement or mass effect. A second area of abnormal signal was noted in the right posterior parietal lobe.

On December 29, 2004, a right-sided hemiparesis with an extensor plantar response was
noted.

On January 5, 2005, the patient’s condition was
judged to be worse, with increasing right-sided
hemiparesis and worsening nonfluent aphasia.
Her right-arm strength was 0/5, and her right-leg
strength was 2/5 proximally and 0/5 distally. On the assumption that her clinical deterioration represented an exacerbation of multiple sclerosis, she received another five-day course of methylprednisolone, beginning on January 5, 2005 (500 mg intravenously twice daily). Her last dose of natalizumab was given on January 18, 2005. On January 24, 2005, her white-cell count was 14,400 per cubic millimeter (77 percent neutrophils, 18 percent lymphocytes, 4 percent monocytes, and 1 percent eosinophils), with an absolute lymphocyte count of 2500 per cubic millimeter.

The patient’s neurologic status continued to decline, and she was hospitalized on February 12,
2005. On admission, she was unresponsive, with a
right-sided gaze preference. She had a marked spastic right-sided hemiplegia and some left-sided weakness.

An MRI scan obtained on February 12
showed a dramatic increase in the extent of
the high T2-weighted and low T1-weighted signal
abnormalities in the left hemisphere, with extension of the lesion to the frontal, parietal, and temporal lobes and across the corpus callosum to the right frontal lobe. New midbrain and pontine lesions were also present. There was no enhancement or mass effect.

At admission, the patient had a whitecell
count of 14,000 per cubic millimeter (77 percent
neutrophils, 16 percent lymphocytes, 6 percent
monocytes, and 1 percent eosinophils and basophils). Her absolute lymphocyte count was normal (2300 cells per cubic millimeter).

An examination of cerebrospinal fluid on February
14, 2005, revealed the following values: 53 mg
of protein per deciliter, 90 mg of glucose per deciliter (5.0 mmol per liter), 4.3 mg of IgG per deciliter, an IgG index of 0.49, a ratio of IgG to albumin of 0.08, and an IgG-synthesis rate of 1.78 mg per 24 hours. No oligoclonal bands were noted. The results of Gram’s staining of a cerebrospinal fluid sample were unremarkable. A polymerase-chain-reaction (PCR) assay of cerebrospinal fluid for herpes simplex virus was negative, as were tests for West Nile virus IgG and IgM, eastern equine encephalomyelitis virus IgG and IgM, Borrelia burgdorferi IgG and IgM, and cryptococcal antigen and stains and cultures for bacteria, fungi, and acid-fast bacilli. A test for serum antibody against human immunodeficiency virus (HIV) type 1 and 2 was nonreactive.

CD4+ and CD8+ T-cell counts were not assessed,
but at no time was either absolute or relative lymphopenia noted.

The treating neurologist suspected PML, and a
cerebrospinal fluid sample sent to the Mayo Medical
Laboratories (Rochester, Minn.) for JC virus PCR
testing was positive.

The patient died on February
24, 2005; she was 46 years old.

Postmortem examination showed bilateral aspiration
pneumonia and cachexia. There was prominent
sinus histiocytosis of the lymph nodes and possible
depletion of CD8+ T cells in comparison with the
levels of CD4+ T cells, probably owing to severe terminal debilitation. Examination of the bone marrow showed a clinically significant leftward shift in granulocytic maturation. All other systemic organs were histologically normal; no non-CNS opportunistic infections were found. Postmortem blood samples were not tested for JC virus DNA or antibody.

The formalin-fixed, 1140-g brain was fluctuant
on palpation over a large portion of the anterior left hemisphere; no discoloration or meningeal opacification was present. On coronal sectioning, this softened area corresponded to massive, coalescent areas of severe cavitation involving most of the left frontoparietal white matter, leaving only a ribbonlike strip of intact overlying cortex.

Smaller, noncavitated, ovoid areas of discoloration, a typical feature of PML, studded the remaining left hemispheric white matter, particularly at the junctions between cortical gray matter and white matter, and involved the right superior frontal gyrus.. A 7-mm lesion was identified in the left cerebral
peduncle.

No multiple-sclerosis plaques were discernible in the corona radiata.

The brain stem, spinal cord, and optic chiasm
were submitted in toto for histologic examination.
Sections (total, 73 blocks) from the brain and spinal cord were stained with hematoxylin and eosin, with one fourth of the sections also stained with Luxol fast blue and periodic acid–Schiff for myelin. All sections were devoid of acute anoxic injury and vasculitis.

Areas of PML showed near-total loss of myelin,
an influx of macrophages, and numerous reactive
astrocytes, but no perivascular or parenchymal lymphocytic inflammation. Astrocytes with bizarre, enlarged hyperchromatic nuclei, a typical finding in PML, were common, even in smaller lesions.
There were large numbers of oligodendrocytes
with the classic violaceous intranuclear
inclusions of PML . Cells with inclusions
had a strong positive signal for JC virus DNA on in
situ hybridization (probe 40847, Enzo Life Sciences).

In addition to the PML lesions seen on gross examination, myriad minute lesions were easily identified microscopically in virtually every section examined from the left cerebral hemisphere, as well as in most of the sections from the right side and all of the brain-stem sections. PML was found only focally in the cerebellum; no granule-cell depletion was seen.

The optic nerve, chiasm, and spinal cord
contained neither PML lesions nor multiple-sclerosis demyelinating lesions. Examination of the spinal cord showed unilateral wallerian degeneration that was due to the cavitated lesions involving the left motor strip and internal capsule. Remote cortical microinfarctions were found in the right superior frontal and parietal gyri and splenium of the corpus callosum.

PML is a demyelinating disease of the CNS caused
by lytic infection of oligodendrocytes by JC polyomavirus. Primary JC virus infection occurs in childhood and is asymptomatic. JC virus antibodies are detectable in approximately 50 to 70 percent of the adult population.3,4

After the primary infection, JC virus remains latent in kidneys and lymphoid organs. Up to 64 percent of healthy adults have shedding of JC virus in urine in the absence of any clinical
symptoms, suggesting that asymptomatic active JC
virus infection is common in immunocompetent
persons.5

In contrast, PML occurs almost exclusively
in immunocompromised persons, particularly
those with depressed cell-mediated immunity resulting from HIV infection, hematologic cancers,
or immunosuppressive medications.1 In recipients
of bone marrow transplants, PML has also been associated with treatment with rituximab, an antibody against CD20 expressed on B cells,6 and cases of PML-like CNS demyelinating illness have been reported in patients with rheumatic diseases treated with antagonists of tumor necrosis factor alpha..7

Although multiple sclerosis is an immune-mediated
disorder, to our knowledge, patients with multiple
sclerosis have not previously been identified as at
increased risk for PML.

Natalizumab is a humanized monoclonal antibody
against alpha4 integrins that was approved by the
Food and Drug Administration for the treatment of
several immune-mediated disorders, including multiple sclerosis and inflammatory bowel disease.8-10

Antibodies against alpha4 integrins inhibit the binding of cells expressing alpha4 beta1 integrain and alpha4 beta7 integrin (e.g., lymphocytes) to vascular-cell adhesion molecule 1 and mucosal addressin-cell adhesion molecule
1 on endothelial cells, a critical step in the diapedesis of lymphocytes across blood vessels into
the CNS and mucosal organs. 10, 11

Treatment with antibodies against alpha4 integrins prevents inflammatory cells from crossing the blood–brain barrier and inhibits the accumulation of immune cells in the CNS in animals with experimental allergic encephalomyelitis.11-13

Our patient received interferon beta-1a for nearly
five years and received combined therapy with natalizumab and interferon beta-1a for just over two years as part of the SENTINEL trial. We therefore cannot rule out a potential contributory role of interferon beta-1a in the genesis of this patient’s PML. However, to date, there have been no reported cases of PML in patients receiving interferon beta-1a monotherapy.

The diagnosis of PML was established on the
basis of a positive PCR assay for JC viral DNA in cerebrospinal
fluid in a patient with clinical and neuroimaging
findings that were typical of PML, and the
diagnosis was confirmed at autopsy. The severity
and extent of disease were dramatic. Nearly every
tissue section from bilateral cerebral hemispheres
that we examined had either macroscopic or microscopic PML lesions, ranging from minute to massive in size. There was extensive tissue destruction and cavitation in the left frontoparietal area, and the lesions contained large numbers of oligodendrocytes with inclusions. No inflammatory response was present.

Although no formal quantitation was
performed, the extent of the PML involvement was
similar to or exceeded that seen in HIV-infected patients before the advent of highly active antiretroviral therapy.
- - -- - - - - - - - - - - - - - - - - - - - - - -

Dr. Tyler is supported by the Reuler–Lewin Family Professorship of Neurology.
We are indebted to the neurologist who cared for the patient; to Dr. Kate Dawson from Biogen Idec, for furnishing some additional
clinical and laboratory information on the patient; to Ms. Lisa Litzenberger for her photographic expertise; to the histologic technicians,
supervised by Mr. David Davis, for slide preparation; and to Ms. Cindy McNair for assistance in the preparation of the manuscript.




I've omitted the references to save space. Anyone wanting them can just speak up and I'll add them.
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PostPosted: Thu Jul 27, 2006 4:00 pm    Post subject: Reply with quote Edit/Delete this post

lady_express_44 wrote:
COOL . . .

And I'm assuming she will be introducing herself, as herself then ...?

Finally, an open discussion (when/if necessary) without moderator interference!

Good plan, Agate.

Cherie



I truly in my heart of hearts, pray that if she joins (and there really is no reason why she should considering) that you will get the closure that you need.

With sincerity,
Joy


edited because I needed to edit it.


Last edited by Guest on Thu Jul 27, 2006 4:08 pm; edited 1 time in total
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PostPosted: Thu Jul 27, 2006 4:04 pm    Post subject: Reply with quote Edit/Delete this post

You're welcome, agate. And thank you for the information!

These are the last two posts moved from "I have MS" thread.




lady_express_44


I had posted this already . . . but it seems to have gotten lost in the shuffle . . . or I'm just not seeing it now . . .

I made a personal decision, some time ago, to not continue to 'start up' dicusssions on non-board-members . . .

However, if others chose to continue to discuss them/their situation, then the conversation is fair game in my mind.

Cherie



mmcc


Quote:
lady_express_44 wrote:
...I made a personal decision, some time ago, to not continue to 'start up' dicusssions on non-board-members . . .

However, if others chose to continue to discuss them/their situation, then the conversation is fair game in my mind.


Give me a break - YOU start attacks by posting something nasty, confidential, or inappropriate about someone and then when anyone challenges you on it, you "decide" its time to stop the discussion.

NO ONE has discussed the person you posted about except you. What I and others have said is that is it inappropriate to discuss others. That is a discussion about your rudeness, not the other person.

NO ONE has attempted to offer any input about that person's condition, reasoning, or medical care except YOU. And since most people here have some sense of compassion, fair play, and good manners, I doubt they will.

Asking for some compassion for a person with MS on an MS board is NOT "discussing" them.

Obviously I cannot stop you from continuing your pattern of starting personal attacks on people who sometimes aren't even here, but I guarantee you they will not go unchallenged.
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PostPosted: Thu Jul 27, 2006 11:50 pm    Post subject: Reply with quote Edit/Delete this post

lady_express_44


Quote:
mmcc wrote:

NO ONE has discussed the person you posted about except you...

NO ONE has attempted to offer any input about that person's condition, reasoning, or medical care except YOU...


I hadn't said anything about the "other person", or their situation, on this new thread. I thought we left that whole conversation behind on the other thread.

However, you chose to bring it up AGAIN here, by insinuating the reason that "she" may have opted to not go with Tysabri. Then you took it to the bank and tried to get in a little dig in AGAIN (about me talking about her on the other thread). . .

Quote:
mmcc wrote:
Tysbari is being restricted to those with ACTIVE lesions as far as I know. That will create a big problem for many people with MS, since there are many of us without ACTIVE lesions who still have severe or rapidly progressing MS with no other options.

Many who were counting on Tysabri are about to be very disappointed.

This is one reason that the comments about named individuals and speculation about whether or not and why they may not be taking Tysabri made me so furious. Lets have a little compassion here - this is a whole lot more serious than idle gossip to a whole lot of MS sufferers.



You have since edited your comments . . . but my response was DIRECTLY related to your insinuation of why she may have opted out of Tysabri.

You implied that she "may" have gone this route, due to inactive lesions . . . and that perhaps this would be a real disappointment to her (and others). . . since perhaps now she's learned that she did not qualify for Tysabri (because of no active lesions).

(Incidently, this is exactly how she tried to word it on MSW too.)

However, someone on MSW had already clarified that this was NOT correct reasoning, as active lesions are NOT actually a mandatory prerequisite to getting Tysabri anyway.

When you brought the discussion from the previous thread up, on this thread, I said:

Quote:
lady_express_44 wrote:

I'm not so sure why you are bringing up that previous conversation AGAIN (I thought we ended it on the previous thread). . . but it is my understanding that Tysabri, as a treatment choice, is still a "matter of discussion and decision" between an individual and their neuro - even if they don't have active lesions ....


For future reference, mmcc, this is how I roll . . .

If you or someone else:

- brings potential excuses or reasoning up for something we spoke about on a previous thread, on a NEW thread, or

- tries to stir up previous discussions in an effort to badger or lecture me on a NEW thread . .

I reckon it's FAIR GAME to respond to the comments (if I so choose to "bite the bait").

The bottom line is - what we talked about the last thread had ABSOLUTELY nothing to do with this conversation - so, if you really didn't want to keep talking about it . . . all you have to do is QUIT BRINGING IT UP ALL OVER THE PLACE.

Cherie

mmcc


Quote:

lady_express_44 wrote:
I hadn't said anything about the "other person", or their situation, on this new thread. I thought we left that whole conversation behind on the other thread.


Yes, you did. Denying it doesn't make it so. Read back on this thread.

Quote:
lady_express_44 wrote:
However, you chose to bring it up AGAIN here, by insinuating the reason that "she" may have opted to not go with Tysabri. Then you took it to the bank and tried to get in a little dig in AGAIN (about me talking about her on the other thread). . .

mmcc wrote:
(NOTE: THIS PART OF MY ORIGINAL POST WAS DELETED BY ME SINCE IT IS INCORRECT - I POSTED THAT EXPLANATION. I APOLOGIZE. WHEN THE THREAD WAS MOVED HERE, THE CORRECTION WASN'T MADE ON THIS THREAD. I WILL FIX IT IMMEDIATELY. I DIDN'T REALIZE THAT THE THREAD APPEARED IN 2 DIFFERENT PLACES)

Tysbari is being restricted to those with ACTIVE lesions as far as I know. That will create a big problem for many people with MS, since there are many of us without ACTIVE lesions who still have severe or rapidly progressing MS with no other options.

Many who were counting on Tysabri are about to be very disappointed.

This is one reason that the comments about named individuals and speculation about whether or not and why they may not be taking Tysabri made me so furious. Lets have a little compassion here - this is a whole lot more serious than idle gossip to a whole lot of MS sufferers.



Yes that is what I said. I in no way meant to imply that that is why THIS person is not taking Tysabri (if in fact she isn't). That is however a possibility - that she is not being permitted to take it. The point is that there are many reasons why someone who previously stated he/she wanted Tysabri would not be taking it and discussing why a specific person made a choice or had a choice thrust upon him/her is not appropriate.

I know at least one person who is not being permitted to take Tysabri when that is what she wants.

Quote:
lady_express_44 wrote:
You have since edited your comments . . . but my response was DIRECTLY related to your insinuation of why she may have opted out of Tysabri.

You implied that she "may" have gone this route, due to inactive lesions . . . and that perhaps this would be a real disappointment to her (and others). . . since perhaps now she's learned that she did not qualify for Tysabri (because of no active lesions).

(Incidently, this is exactly how she tried to word it on MSW too.)

However, someone on MSW had already clarified that this was NOT correct reasoning, as active lesions are NOT actually a mandatory prerequisite to getting Tysabri anyway.



If you are reading some explanation of why this person has opted out of Tysabri, then why are you writing things here which are apparently NOT what she said?

So now you are not only discussing her personal medical situation but deciding for yourself why she is or is not taking Tysabri and ignoring whatever she posted herself?????????

Quote:
lady_express_44 wrote:
For future reference, mmcc, this is how I roll . . .



Suit yourself.
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PostPosted: Fri Jul 28, 2006 2:16 pm    Post subject: Reply with quote

I've deleted all of the posts on Matt's "I have MS" thread that have to do with Tysabri and that were already copied and pasted into this thread.

I HOPE I didn't accidentally delete anyone's post entirely. If I did, I apologize.

My feeling was that people wanted to have the posts here in the Tysabri thread but not also in the "I have MS" thread because it was confusing to have the same posts in two places.
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Location: Maryland

PostPosted: Wed Aug 02, 2006 6:39 pm    Post subject: Reply with quote

agate wrote:
Just for the record, the person who was almost under discussion again here has been specifically invited to join this board. I haven't personally invited even half a dozen people here, but she is one of them.

I did this at the suggestion of a couple of people here. We agreed that this person should have a chance to know what was being said about her here and to tell her side if she wanted.

I don't believe she has joined yet but she might do so at any time.


I also contacted her and she said she was not planning to join and was very angry about having her personal business discussed.
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PostPosted: Fri Aug 04, 2006 11:08 pm    Post subject: Reply with quote

I just noticed this thread was dredged up again on Wednesday.

mmcc wrote:
agate wrote:
Just for the record, the person who was almost under discussion again here has been specifically invited to join this board.


I also contacted her and she said she was not planning to join and was very angry about having her personal business discussed.


You contacted her, and discussed her "feelings" on the subject? I thought you said you didn't know any of the mods over there?:

mmcc wrote:

Thu Jul 13, 2006 5:20 pm Post subject:

lady_express_44 wrote:

mmcc has said she is not a member there, but has not mentioned whether she is friendly with any of the mods. . .


I do not belong to MSW and as far as I know I do not know any moderators from there


Don't worry, she was well aware of everything that was said here, and she has access to the board, if she so choses to join.

We are done with this conversation I hope though.

Cherie
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PostPosted: Fri Aug 04, 2006 11:44 pm    Post subject: Reply with quote

Cherie, you're jumping to conclusions here. mmcc may have joined MSWorld at least for as long as it took to send an e-mail or a PM to the moderator in question. Whether or not mmcc opened up first about what topics were discussed on this board, or whether the moderator asked what topics were discussed and then mmcc replied--does it really matter?

Because I'm still a member at MSW it was easy for me to send a PM to the moderator inviting her to join this board. She declined but was very agreeable about it. I don't see how you've proved that mmcc wasn't truthful when she said she didn't know any of the MSW mods. If somebody says they don't "know" someone, I take that to mean "know in person." Anybody can send a mod a PM there. You don't have to know the mod personally to write a couple of sentences in a PM.
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Avonex 2002-2005. Copaxone 2007-2010.


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PostPosted: Sat Aug 05, 2006 12:07 am    Post subject: Reply with quote

agate wrote:
I don't see how you've proved that mmcc wasn't truthful when she said she didn't know any of the MSW mods.


I didn't say I've proven anything, Agate.

I just asked mmcc a question, and referenced an earlier comment of hers.

I don't care if they have since become acquainted. They probably have a lot in common actually, especially with regard to Tysabri; attending the open FDA meeting, etc.

In fact, I think she was a speaker at that meeting . . . do you remember her now, mmcc?

Cherie
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PostPosted: Sat Aug 05, 2006 10:41 am    Post subject: Reply with quote

lady_express_44 wrote:
agate wrote:
I don't see how you've proved that mmcc wasn't truthful when she said she didn't know any of the MSW mods.


I didn't say I've proven anything, Agate.

I just asked mmcc a question, and referenced an earlier comment of hers.

I don't care if they have since become acquainted. They probably have a lot in common actually, especially with regard to Tysabri; attending the open FDA meeting, etc.

In fact, I think she was a speaker at that meeting . . . do you remember her now, mmcc?

Cherie


Cherie, please allow me to end the rampant paranoia before it gets out of control.

When I told you (posted) that I had never belonged to MS World under any name that was accurate.

When I told you (posted) thatI did not know any moderators there, that was also accurate.

Now the rest of this is none of your business, but in the interests of ending these paranoid speculations, let me clear:

1. I joined MSWorld about a week ago (maybe it was 6 days, maybe 8) SPECIFICALLY to contact the person you were trashing since you chose to attack her by name and refused to delete those references

I sent her a PM informing her that she was being talked about by name here.

I have no interest in becoming an active member there - the thread about stem cells was all it took to be sure of that, BTW.

2. She then reminded me that I had met her at the FDA hearing. I had no idea this was the same person.

3. And, no, I do not remember her from the hearing. I met a bunch of people that day and I except for Stan and one other person, both of whom I had met before, I doubt I would recognize anyone if I saw them again.

lady_express_44 wrote:
Don't worry, she was well aware of everything that was said here


What does this mean? I thought this forum could not be viewed unless you belonged/
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PostPosted: Sat Aug 05, 2006 11:32 am    Post subject: Reply with quote

That's right, mmcc. You can't read the posts here unless you've registered.

Cherie might mean that she's assuming that the MSWorld mod who was discussed has registered under an unrecognizable user name--in which case she could be reading the posts here.

There are a number of members who have joined but never posted. So it is possible, and there's no way that I know of to solve that problem.

Being selective about who joins--making people show a bunch of "credentials" at the door, say--just isn't feasible because of the nature of the Internet.

Thanks for giving the background information on your association with the MSW mod, mmcc. A person who's been banned/suspended almost simultaneously on the two major MS boards would probably be fairly shaken up by the experience--and become overly suspicious for a while, I would think.
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PostPosted: Sat Aug 05, 2006 12:28 pm    Post subject: Reply with quote

No problem, Agate.

Since I don't read everything everyday, it might have been easier if ladyexpress had either PMed me or posted a message directly to me rather than keep speculating.

While it is nobody's business but mine, I did answer when I saw the posting and would have sooner if I had known about the concern.
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PostPosted: Sun Aug 06, 2006 7:52 am    Post subject: Reply with quote

agate wrote:
That's right, mmcc. You can't read the posts here unless you've registered.

Thanks for giving the background information on your association with the MSW mod, mmcc. A person who's been banned/suspended almost simultaneously on the two major MS boards would probably be fairly shaken up by the experience--and become overly suspicious for a while, I would think.


I don't know how she knows - you'll have to ask her, if you are really interested.

If you do, please let her know that I am receiving her messages that she is specifically passing on for me though, won't you?

I'm not shaken by any experience. With so many of them now trying LDN, I think the "gang" has finally come to realize that I really did have a good message for PwMS all along.

Too bad she had to ban me from one board, and follow me (under alias') to another two boards, before she finally figured that out.

Wish her all the best from me, if you don't mind.

Cherie
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PostPosted: Sun Aug 06, 2006 9:10 am    Post subject: Reply with quote

lady_express_44 wrote:
If you do, please let her know that I am receiving her messages that she is specifically passing on for me though, won't you?

Exactly what messages are those? Ae they being passed subliminally?

lady_express_44 wrote:
Too bad she had to ban me from one board, and follow me (under alias') to another two boards...

Is it possible that your membership on a board is not the deciding factor in why someone would join or not join?

lady_express_44 wrote:
Wish her all the best from me, if you don't mind.

Lets knock off the innuendoes. If you have something to say, say it.

If you want to talk to the other person, talk to them. This is not high school, and if you want to pass notes, find someone else to do it for you.
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PostPosted: Sun Aug 06, 2006 11:12 am    Post subject: Reply with quote

mmcc wrote:
lady_express_44 wrote:
If you do, please let her know that I am receiving her messages that she is specifically passing on for me though, won't you?

Exactly what messages are those? Ae they being passed subliminally?

lady_express_44 wrote:
Too bad she had to ban me from one board, and follow me (under alias') to another two boards...

Is it possible that your membership on a board is not the deciding factor in why someone would join or not join?

lady_express_44 wrote:
Wish her all the best from me, if you don't mind.

Lets knock off the innuendoes. If you have something to say, say it.

If you want to talk to the other person, talk to them. This is not high school, and if you want to pass notes, find someone else to do it for you.


Aren't you just too witty, mmcc. geek

Just pass the message on like the good little tattle-tale you are. :-)
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PostPosted: Sun Aug 06, 2006 6:17 pm    Post subject: Reply with quote

lady_express_44 wrote:
mmcc wrote:
lady_express_44 wrote:
If you do, please let her know that I am receiving her messages that she is specifically passing on for me though, won't you?

Exactly what messages are those? Ae they being passed subliminally?

lady_express_44 wrote:
Too bad she had to ban me from one board, and follow me (under alias') to another two boards...

Is it possible that your membership on a board is not the deciding factor in why someone would join or not join?

lady_express_44 wrote:
Wish her all the best from me, if you don't mind.

Lets knock off the innuendoes. If you have something to say, say it.

If you want to talk to the other person, talk to them. This is not high school, and if you want to pass notes, find someone else to do it for you.


Aren't you just too witty, mmcc. geek

Just pass the message on like the good little tattle-tale you are. :-)


If you want to talk to the other person, talk to them. This is not high school, and if you want to pass notes, find someone else to do it for you.
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PostPosted: Sun Aug 06, 2006 8:32 pm    Post subject: Reply with quote

mmcc wrote:

If you want to talk to the other person, talk to them. This is not high school, and if you want to pass notes, find someone else to do it for you.


No worries, mmcc. As I said, she already knows what's being said.

Hmmm ... and here I thought it was grade school, with you running around tattle-taling and all. geek

Cherie
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PostPosted: Sun Aug 06, 2006 9:36 pm    Post subject: Reply with quote

lady_express_44 wrote:
mmcc wrote:

If you want to talk to the other person, talk to them. This is not high school, and if you want to pass notes, find someone else to do it for you.


No worries, mmcc. As I said, she already knows what's being said.

And how do YOU know what SHE knows? Are you secretly communicating with her?

lady_express_44 wrote:
Hmmm ... and here I thought it was grade school, with you running around tattle-taling and all. geek


What exactly is it you are accusing me of?

Are you ashamed of what you said/did? While that would certainly be different, if you are not then what exactly is the "tattle-taling" you are referring to?

Do you think that the person whose personal medical information/decisions you were discussing here by NAME, and as you admitted yourself, without mentioning what her stated reasons were should not be aware of what you were doing?

As several other people here with a sense of decency did, I invited her to join. Personally I wouldn't have if I were her since she should not HAVE to join a forum in order to answer allegations and innuendoes, but common courtesy and decency dictate inviting her.

Were/are you hoping to goad her into coming here so we can all be subjected to more tirades about her following you?

IF I choose to email, speak to, or correspond with the person you seem to want villify or anyone else I will, inspite of your kindergarten tactics.

Are you going to answer the question about how you know what she knows or not?
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PostPosted: Sun Aug 06, 2006 11:51 pm    Post subject: Reply with quote

mmcc wrote:

1. I joined MSWorld about a week ago (maybe it was 6 days, maybe 8) SPECIFICALLY to contact the person you were trashing since you chose to attack her by name and refused to delete those references

I sent her a PM informing her that she was being talked about by name here.

I have no interest in becoming an active member there - the thread about stem cells was all it took to be sure of that, BTW.


mmcc wrote:

lady_express_44 wrote:
Hmmm ... and here I thought it was grade school, with you running around tattle-taling and all. geek


What exactly is it you are accusing me of?


I think I was pretty clear about that answer. scratch

mmcc wrote:
Do you think that the person whose personal medical information/decisions you were discussing here by NAME, and as you admitted yourself, without mentioning what her stated reasons were should not be aware of what you were doing?

As several other people here with a sense of decency did, I invited her to join. Personally I wouldn't have if I were her since she should not HAVE to join a forum in order to answer allegations and innuendoes, but common courtesy and decency dictate inviting her.


Agate is a member there, and had already told us that she had been specifically invited to this board. There was no need for YOU to involve yourself too (signing up to the board for that specific purpose, et al).

mmcc wrote:

I also contacted her and ...


I didn't "reveal" anything about her "personal medical information". Everything that I said was already publically displayed, BY HER, on one of the largest MS boards on the internet. Clearly, she doesn't mind sharing.

mmcc wrote:
Are you going to answer the question about how you know what she knows or not?


Like I said, ask her yourself, if you are that nosey. She's the one passing on messages, not me.

Cherie
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PostPosted: Mon Aug 07, 2006 7:59 am    Post subject: Reply with quote

Thanks for the clarification. Unless I am misinterpreting your response, please don't bother to reply:

1. You see nothing wrong in speculating abouts someone's private medical decisions without either informing them or asking them first.

2. You feel it is somehow "wrong" to let the person know she is being discussed without her knowledge. (Agate did not post that she had done this).

3. You consider it "nosy" to inform someone that they are being discussed, but not "nosy" to be discussing them in a forum which they cannot read unless they join.

4. Although the person posted the reasons for her decision on the other board, you didn't mention what they were and proceeded to speculate about different reasons - reasons entirely fabricated by yourself.

There is nothing wrong with that?

Okay, your morals have been clarified.

Mine are a tad higher.
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PostPosted: Mon Aug 07, 2006 8:54 am    Post subject: Reply with quote

Cherie, are you saying that you've been getting messages from this MSWorld moderator?

"Passing on messages" is unclear to me. Is she forwarding posts or messages from other people, or what?

How often has this happened? Is it done in a hostile way? Would you say you're being harassed?

You're implying something of the sort. If so, I hope you'll contact me privately and we'll see if something can be done to stop it.

As of now, though, it's innuendo because you're not spelling out specifically what's been going on.

For the record, I sent this person a "standard" invitation to join this board. It was almost identical to any other invitation to join this board that I've sent out. I said nothing about who was here or what was being discussed.
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PostPosted: Mon Aug 07, 2006 10:16 am    Post subject: Reply with quote

I've thought about this.

1) No, I wouldn't like people discussing my personal information on a board where I wasn't a member

2) I might be less pissed or maybe even not pissed if they were people who were really concerned and cared about me, and that's why they were discussing it

3) If it were done by someone who has repeatedly bashed me, I would be totally freaked out and furious. That is wrong.
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PostPosted: Mon Aug 07, 2006 11:23 am    Post subject: Reply with quote

mmcc wrote:
Thanks for the clarification. Unless I am misinterpreting your response, please don't bother to reply:


Of course you are misinterpreting, like you always do, mmcc.

mmcc wrote:
1. You see nothing wrong in speculating abouts someone's private medical decisions without either informing them or asking them first.


No where in this conversation did I accuse anyone of "speculating". You are the one that originally brought that subject-matter up, and continue to do so.

Making "ASSumtions", then lecturing based on those ASSumptions, was MY point.

Since you insist on dragging the other thread into this one . . . I did not "speculate" there. I stated what I knew, and asked if anyone knew any more than that.

lady_express_44 wrote:

it seems now that her and her Neuro have decided that T isn't a good course of action for her. Anyone know why? It's not an age thing, since she had her first infusions of T last year, when she was only a year younger. And it's not that she isn't relapsing any longer, because she says she still has attacks every three months. scratch


mmcc wrote:
2. You feel it is somehow "wrong" to let the person know she is being discussed without her knowledge. (Agate did not post that she had done this).

3. You consider it "nosy" to inform someone that they are being discussed, but not "nosy" to be discussing them in a forum which they cannot read unless they join.


You guys ought to read what was posted previously, before you start coming up with new reasons for why you felt need to go tattle-taling too. Agate already told us she took care of inviting her, and stated the reasons that it was done:

agate wrote:

Just for the record, the person who was almost under discussion again here has been specifically invited to join this board. I haven't personally invited even half a dozen people here, but she is one of them.

I did this at the suggestion of a couple of people here. We agreed that this person should have a chance to know what was being said about her here and to tell her side if she wanted.


mmcc wrote:
4. Although the person posted the reasons for her decision on the other board, you didn't mention what they were and proceeded to speculate about different reasons - reasons entirely fabricated by yourself.


At that point, she hadn't posted her reasons for not going on Tysabri. All she had posted was reasons why "a person" might not be able to . . . but she didn't fit in any of those categories.

So, we're right back to you tattle-taling and just being nosey.

Great morals there, mmcc! thumbright

Cherie
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PostPosted: Mon Aug 07, 2006 1:42 pm    Post subject: Reply with quote

Cherie, could you please remove your spurs? This constant digging at people is being overdone, in my opinion.

I didn't know mmcc had invited the person in question when I invited her. So she got at least two invitations--no big deal, really. Anybody can invite anybody here, as I've said before.

What people say to the invitees when inviting them is their business.

Nobody takes a vow to keep quiet about whatever is said here. If mmcc opted to let this person know she was being discussed, that's her right. Free speech.
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PostPosted: Tue Aug 08, 2006 1:13 pm    Post subject: Reply with quote

lady_express_44 wrote:

You guys ought to read what was posted previously, before you start coming up with new reasons for why you felt need to go tattle-taling too. Agate already told us she took care of inviting her, and stated the reasons that it was done:


If you are trying to make yourself look better than mmcc or Agate, it's not working. They probably stopped calling people "tattle-tales" many years ago.

I wonder if it might be a good idea to destickify this thread, and start a new Tysabri sticky.

There is a lot on this thread that has nothing to do with Tysabri. Tysabri is not being debated. There are some posts that have some very helpful information about Tysabri, but they represent a very small minority of the posts.

It's all up to you, Agate, of course.
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PostPosted: Tue Aug 08, 2006 1:16 pm    Post subject: Reply with quote

Good idea, Matt. I'll destickify it.
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PostPosted: Tue Aug 08, 2006 2:53 pm    Post subject: Reply with quote

Great idea, Matt and Agate.
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PostPosted: Tue Aug 08, 2006 3:14 pm    Post subject: Reply with quote

Matt and Agate,

I will try to answer all your points in one posting.

matt wrote:
If you are trying to make yourself look better than mmcc or Agate, it's not working. They probably stopped calling people "tattle-tales" many years ago.


Matt,

I am not trying to do anything to Agate.

Going back through THIS thread . . . as per usual, mmcc could not contrain herself, and dug up the discussions about the "unnamed individual" on yet a ANOTHER new thread"

mmcc wrote:
Tysbari is being restricted to those with ACTIVE lesions as far as I know. That will create a big problem for many people with MS, since there are many of us without ACTIVE lesions who still have severe or rapidly progressing MS with no other options.

Many who were counting on Tysabri are about to be very disappointed.

This is one reason that the comments about named individuals and speculation about whether or not and why they may not be taking Tysabri made me so furious. Lets have a little compassion here - this is a whole lot more serious than idle gossip to a whole lot of MS sufferers.


mmcc has since deleted the incorrect "information" she posted (above), but I responded with:

lady_express_44 wrote:
I'm not so sure why you are bringing up that previous conversation AGAIN (I thought we ended it on the previous thread). . .


Then, almost a week later, mmcc dredges this thread back up again, just to talk about this "unnamed person" AGAIN:

mmcc wrote:
I also contacted her and she said she was not planning to join.


The 'story' went on, that mmcc only contacted her out of the goodness of her heart and due to her high morals blah5 but, Agate had ALREADY informed us she did the same thing . . . so clearly there was absolutely no need for mmcc to get involved.

Agate,

agate wrote:
I didn't know mmcc had invited the person in question when I invited her.

Nobody takes a vow to keep quiet about whatever is said here. If mmcc opted to let this person know she was being discussed, that's her right. Free speech.


On July 27th, you said that some of you had discussed the situation, and that you had already invited the unnamed individual to this board so she could defend herself.

On Aug 2, mmcc advised that she too had talked to her, and that the unnamed indivdual had declined to join the board.

Then on Aug 5, mmcc confirmed that she had joined MSW, within the past 6 - 8 days (taking us back to approx July 28 - July 30). This would have been after you contacted her already.

mmcc's primary purpose in contacting her, as stated, was to ALSO tell her what was going on here.

mmcc wrote:
I also contacted her..


Free speach is one thing . . . and then there is "shit-stirring". As I said, there was for mmcc to involve herself, since the unnamed individual ALREADY knew what was going on (from you)!

agate wrote:
Cherie, could you please remove your spurs? This constant digging at people is being overdone, in my opinion.


Agate, look back through the thread. There have been constant spurs/digs/innuendos towards me, including such comments as:

mmcc wrote:
Cherie, please allow me to end the rampant paranoia before it gets out of control.

...in the interests of ending these paranoid speculations...


agate wrote:
A person who's been banned/suspended almost simultaneously on the two major MS boards would probably be fairly shaken up by the experience--and become overly suspicious for a while...


mmcc wrote:
Are they being passed subliminally?


mmcc wrote:
Is it possible that your membership on a board is not the deciding factor in why someone would join or not join?


mmcc wrote:
Okay, your morals have been clarified.
Mine are a tad higher


Accusing me of being "paranoid", of getting messages "subliminally", having no "morals" or "compassion", and being "overly suspicious" are spurs if I ever heard them.

I can't ALWAYS take the higher ground.

I can well imagine you would prefer that I delete my comments, since it proves my point, but I won't be doing that.

Matt wrote:
I've thought about this.

1) No, I wouldn't like people discussing my personal information on a board where I wasn't a member


Remember back, Matt . . . the whole reason that the topic about the unnamed person came up on this board to begin with, was because YOU and OTHERS (from this board) were on another board and talking/speculating what happened to a freqeunt poster (ME) at MSW/BT.

There was some heavy-duty innuendo going on on that thread, including some by one of the mods of MSW, and I was UNABLE to sign onto that board. That is NOT the case here, whereby anybody who wants to can get access and respond to any comments being made.

So, the inital PRIMARY REASON I signed up to this board is because I wanted to explain my side of the story, in what happened to me at MSW, then subsequently when I was followed by the MSW mod to BT.

Since then, this same topic has continued to be dragged up by mmcc, in almost every conversation.

As I've said at least a dozen times already, all she has to do is STOP making any reference to that person/or my banning (by that person). But, bringing this up over and over again to antagonize me, is the only interest she seems to have in this board.

So, if I get a cheap thrill out of calling her a tattle-tale (which she is, BTW), instead of outright saying what is blatantly going on with a few people here (and no, no need to be concerned whether I am just being "paranoid") . . . then so be it.

You know, I've had a lot of people ask me how I keep my cool with some of the things that have been said to/about me here. For the record, the reason is that I've have run into some petty, nasty, self-serving, mean bitches in my HR career, many of whom had more intelligence alone, then two people here put together.

The truth always wins out.

Cherie

PS: I'm not calling anyone here "petty, nasty...". I'm just saying that I've dealt with much more difficult situations then this one.
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Matt



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PostPosted: Tue Aug 08, 2006 4:04 pm    Post subject: Reply with quote

lady_express_44 wrote:


Remember back, Matt . . . the whole reason that the topic about the unnamed person came up on this board to begin with, was because YOU and OTHERS (from this board) were on another board and talking/speculating what happened to a freqeunt poster (ME) at MSW/BT.

There was some heavy-duty innuendo going on on that thread, including some by one of the mods of MSW, and I was UNABLE to sign onto that board. That is NOT the case here, whereby anybody who wants to can get access and respond to any comments being made.

So, the inital PRIMARY REASON I signed up to this board is because I wanted to explain my side of the story, in what happened to me at MSW, then subsequently when I was followed by the MSW mod to BT.



I still do feel bad about that whole situation. I remember even sending Agate a PM saying that you should have the right to sign on to tell me off if nothing else. I didn't think that it was right for me to be able to post something and you not to be able to respond.

The stuff I was saying wasn't meant to be ALL about you though. I definitely was not trying to be harmful to you. And, I didn't discuss the same sort of personal information.

Nonetheless, I was most certainly guilty of poor judgement, and I do feel bad about it.

The way I see it, mmcc was just trying to correct a situation for the person in question.

You have really inaccurately portrayed what has happened on this thread, IMO. I might come back with another post. It takes so much effort to do that type of post where people argue about what did or didn't happen on a thread.
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PostPosted: Tue Aug 08, 2006 6:03 pm    Post subject: Reply with quote

Cherie, you wrote:

Quote:
On July 27th, you said that some of you had discussed the situation, and that you had already invited the unnamed individual to this board so she could defend herself.

On Aug 2, mmcc advised that she too had talked to her, and that the unnamed indivdual had declined to join the board.

Then on Aug 5, mmcc confirmed that she had joined MSW, within the past 6 - 8 days (taking us back to approx July 28 - July 30). This would have been after you contacted her already.

mmcc's primary purpose in contacting her, as stated, was to ALSO tell her what was going on here.


You may be assuming that mmcc is one of the people I discussed this matter with before I invited the MSW mod to join this board. I did not. And mmcc has no way of knowing what I said and didn't say when I invited the MSW mod. When I sent a message to the mod, I didn't mention anything about what was going on here, but that is not the point.

Suppose you are right, and mmcc DID go out of her way to let the MSW mod know she'd been discussed here. Isn't that her right? I don't think any of us can blame mmcc for her private communication with the MSW mod. After all, she didn't have to tell US about any of it, but she was good enough to do so.

You also wrote:

Quote:
So, the inital PRIMARY REASON I signed up to this board is because I wanted to explain my side of the story, in what happened to me at MSW, then subsequently when I was followed by the MSW mod to BT.



I hope that by now you're finding it worth your while to be part of this board for other reasons. It hurts a bit to realize that somebody has joined here with a personal agenda that does harm to the board. A number of people have left this board because they couldn't take the quarreling. A couple of others are waiting patiently in the wings and hoping it will stop, but if it doesn't, they will probably leave, too.
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PostPosted: Tue Aug 08, 2006 7:18 pm    Post subject: Reply with quote

Matt wrote:
lady_express_44 wrote:


Remember back, Matt . . . the whole reason that the topic about the unnamed person came up on this board to begin with, was because YOU and OTHERS (from this board) were on another board and talking/speculating what happened to a freqeunt poster (ME) at MSW/BT.

There was some heavy-duty innuendo going on on that thread, including some by one of the mods of MSW, and I was UNABLE to sign onto that board. That is NOT the case here, whereby anybody who wants to can get access and respond to any comments being made.

So, the inital PRIMARY REASON I signed up to this board is because I wanted to explain my side of the story, in what happened to me at MSW, then subsequently when I was followed by the MSW mod to BT.



I still do feel bad about that whole situation. I remember even sending Agate a PM saying that you should have the right to sign on to tell me off if nothing else. I didn't think that it was right for me to be able to post something and you not to be able to respond.

The stuff I was saying wasn't meant to be ALL about you though. I definitely was not trying to be harmful to you. And, I didn't discuss the same sort of personal information.

Nonetheless, I was most certainly guilty of poor judgement, and I do feel bad about it.

The way I see it, mmcc was just trying to correct a situation for the person in question.

You have really inaccurately portrayed what has happened on this thread, IMO. I might come back with another post. It takes so much effort to do that type of post where people argue about what did or didn't happen on a thread.


Bygones, Matt.

I was just trying to make a point that I DO know how it feels, and understand even better because I couldn't respond.

I would sincerely like to STOP talking about what happened in the past. She is not worth this much discussion, quite frankly. All it will take is for this subject matter to STOP being thrown in my face at every turn.

Let's put this to the test. No more digs/innuendo/comments that involves this subject, and mark my words . . . this will end right here and right now.

Cherie
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lady_express_44



Joined: 22 May 2006
Posts: 1314
Location: Vancouver, Canada

PostPosted: Tue Aug 08, 2006 7:50 pm    Post subject: Reply with quote

agate wrote:

You may be assuming that mmcc is one of the people I discussed this matter with before I invited the MSW mod to join this board. I did not. And mmcc has no way of knowing what I said and didn't say when I invited the MSW mod. When I sent a message to the mod, I didn't mention anything about what was going on here, but that is not the point.

Suppose you are right, and mmcc DID go out of her way to let the MSW mod know she'd been discussed here. Isn't that her right? I don't think any of us can blame mmcc for her private communication with the MSW mod. After all, she didn't have to tell US about any of it, but she was good enough to do so.

You also wrote:

Quote:
So, the inital PRIMARY REASON I signed up to this board is because I wanted to explain my side of the story, in what happened to me at MSW, then subsequently when I was followed by the MSW mod to BT.



I hope that by now you're finding it worth your while to be part of this board for other reasons. It hurts a bit to realize that somebody has joined here with a personal agenda that does harm to the board. A number of people have left this board because they couldn't take the quarreling. A couple of others are waiting patiently in the wings and hoping it will stop, but if it doesn't, they will probably leave, too.



I asked a question, Agate; whether anyone knew the reason why she opted out of Tysabri. Big freakin' deal.

I hardly think this is revealing personal information. Everything that I have ever said was:

- something SHE had already PUBLICALLY announced on her board
- discussion that occurred when he/she was still a part of this board
- my initial comments about my banning/her following me to BT.

There are PLENTY of people from this board, who are obviously much closer/friendlier with her then mmcc is. Several of the people here are long-standing members of MSW, and either they didn't feel the need to say anything to her, or they had already taken care of it themselves.

mmcc did NOT need to get involved. To me, it was nothing but shit-stirring to go over there and try to stir up a complete stranger to come over here. Nothing you could say would ever convince me otherwise.

I never thought for one second that she would ever sign on her with her own name anyway.

This is all bullshit anyway, because as I said, she clearly KNOWS what's going on here/being said or I wouldn't be getting relayed the messages that I am.

I did not have a personal agenda to do harm to this board. I wanted to say my side of the story about what was being talked about me on another board, and that would have been the end of it in my mind.

I agree that a number of people have left the board because they couldn't take the quarreling. They aren't leaving because I said something about somebody else - they are leaving because of the constant bickering that goes any time I offer an opinion or state a fact - no MATTER what the subject matter.

It's like a few people are cats just waiting to attack every time I say something . . . and this is upsetting to a lot of people, especially those who know my integrity and character.

As I said to Matt . . . I challenge y'all to not mention anything about the past again, and you will see that most of the quarreling will stop. But, if they continue to get their digs in, I WILL continue to defend myself.

Cherie
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agate
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Joined: 17 May 2006
Posts: 5694
Location: Oregon

PostPosted: Tue Aug 08, 2006 8:19 pm    Post subject: Reply with quote

You wrote:
Quote:
hardly think this is revealing personal information. Everything that I have ever said was:

- something SHE had already PUBLICALLY announced on her board
- discussion that occurred when he/she was still a part of this board
- my initial comments about my banning/her following me to BT.



"discussion that occurred when he/she was still a part of this board"????? It has never been proved that he/she ever was a part of this board. In fact, I don't believe she ever was on this board as a registered member, though she may have been getting messages about the posts from other people here. That can always happen--which is another good reason not to discuss people on other boards.

I believe that you mean what you say. I believe you won't continue the quarrel, which has gone on too long.

You have contributed in many useful ways here. I believe that you'll continue to do so.

Even though this dispute has cost this board some members, I like to think that we've shown we can be a place where people can vent their problems without fear of being deleted or banned.
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