Wot's...uh...the deal ?

 
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Mr Soul



Joined: 21 May 2006
Posts: 741

PostPosted: Tue Jul 11, 2006 8:26 am    Post subject: Wot's...uh...the deal ? Reply with quote

Why does LDN have this mystique (or TABOO) about it ? I mean, shit, it's legal, if it's legal (and even if it wasn't) and it helps people, why not use it ?
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Destiny



Joined: 22 Jun 2006
Posts: 52

PostPosted: Tue Jul 11, 2006 9:42 am    Post subject: Reply with quote

It wouldn't have a mistique or taboo appearance about it if people were able to talk openly about it on forums for those with MS.

That is one of the reason's that I found this board so refreshing! I am quite ready to have an open discussion about the merits of using LDN as I'm sure many others are as well.

I think for some people the fact that a drug that is so cheap and does so much for so many illnesses is hard to fathom. They tend to see it as snake oil. I'm here to tell you that it is not.

Last year in about Oct my MS began a steady progression, I went from having ocassional fatigue to having it daily and it was gaining steam, altering everything that I did. I had to park in HC parking just to buy a few groceries, just to keep from limping back to the car.

My bowel and bladder problems were increasing. ON type pain behind my eye was developing. Spasticity had gone from mild and ocassional to everyday and was going to require daily meds.

Dysphasia went from a once a month thing to once a week at least. Left-sided weakness was also increasing. I felt as if I had lead weights attached to my body and movement was just so exhausting.

Cognitive issues that went from forgetfulness to constant brain fog and a decrease in intelligence. I could not make sense of simple things, I found myself crying in the middle of the floor one day because I couldn't remember how to turn on the powerhead to my vaccuum cleaner. It was devastating.

I was developing tremor. I had back pain that was so bad if you touched a certain spot on my spine it would put me on the floor and I would actually scream out in an groan of agony. My electric shocks were also increasing and they too would put me to my knees and make me breathless.

Numbness and tingling were increasing too and they also went from primarily left-sided to both sides of my body. Now at this time I was still working but was about to make a decision that if something didn't change and quickly, I would had to have left my job. I could still get around my house just fine and could make a maximum of one trip to my basement in a day. I also napped for several hours everyday just so I would have enough energy to function like a normal person.

All of this happened between Oct, 2005 and mid-Jan, 2006. I had my Dr appt on Jan 19 and he rx'd the LDN for me. I had it in hand the next day, it took a little finagling to get it that quickly, but I did.

I took the LDN on Jan 20th and woke up the next day to feel better than I had in a long time. I had energy, the spasticity was pretty much gone, no lead weight feeling, brain fog a lifted. I actually took my X-mas tree down that day and packed 6 boxes to the basement by myself. We went to a B-day party that afternoon and then out to dinner and I could have gone shopping afterward if my DH hadn't been tired.

Everything began to change for me everyday got better and better. I look and feel as healthy as the average person on the streets today. All of the issues that I had prior to using the LDN have completely gone away for me know. But I've now been on LDN for 6 1/2 months.

My story has a lot more to it, but that is enoough for now.

Dave, may I call you that, would you believe what I am telling you if you were just reading this story on some website touting the merits of LDN? If this were not a message board and just a site telling you that you should try LDN-- would you?

I doubt it, you would say there is no way that story is true. They're just trying to sell me something, correct?

I'm not selling anything! I'm just telling you what LDN has done for me.
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LoLo



Joined: 22 May 2006
Posts: 253
Location: Boston

PostPosted: Tue Jul 11, 2006 10:18 am    Post subject: Reply with quote

Destiny -

maybe I missed an earlier post, but I was wondering how you got your doc to prescribe LDN? My neuro won't even discuss it until trials are are done, and they show success.

In other words, never. My PCP won't prescribe any off label drugs either. I'm currently on Copaxone, so I could combine with LDN...if it would help my fatigue and eyesight issues, it would be an enormous help to me in my job. Some days are such a struggle.
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lady_express_44



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

PostPosted: Tue Jul 11, 2006 11:02 am    Post subject: Reply with quote

I could repeat, almost verbatim, what Destiny said. LDN has been an amazing force in my life.

My Neuro wouldn't talk about it either, and my doctor went along with my Neuro's recommendation.

It's a very long story (18 months, all tolled), but eventually I threatened my doctor that I would get it from the internet if he didn't rx it to me. It can be obtained off the internet as these sites have "on site" doctors that will rx it.

My doctor made me do up a "risk assessment" document, which in my state (of mind and physical ability) at the time, took me 6 months to prepare. It answered all of the questions about the legality of rx'ing LDN, right through to a letter accepting responsibility for my decision (including a detailed assessment of the LDN against the NMSS "danger signs for choosing alternative therapies") blah5 blah5 blah5

I have now made that document generic, so anyone can use it to approach their Neuro/doctor to get the rx. I would be happy to provide it to you, if you like.

When I was rx'd LDN by my doc, it was under the condition that I am reviewed monthly, then quarterly, then at 9 months with my Neuro. I did exceptionally well, and my Neuro was MORE THAN impressed with my progress.

The world class MS Research Center, where my Neuro was, now rx's LDN to anyone who asks for it. (This is the same center where many of the CRAB trials were done).

So, if you need some help, let me know.

Cherie

PS: please bear in mind that LDN's "claim to fame" is that it slows progression and stops attacks. IF a person sees symptom improvement (anecdotally, the majority do), then that is seen as a BONUS.
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Destiny



Joined: 22 Jun 2006
Posts: 52

PostPosted: Tue Jul 11, 2006 11:02 am    Post subject: Reply with quote

Well I just happen to be one of the lucky people who has a doctor (MS Specialist) who listens to what his patients want.

I asked him for it and he said that it wouldn't hurt me and if it helped, well then great.

He also wanted me on Copaxone and I don't like needles (I did Beta for almost 2 1/2 years, not good for me). I told him I'd rather do one drug at a time and that I really did not want to do anymore shots at that time.

He said that he would rx the LDN with a promise that if at my 6 month appointment he did not think LDN was helping me or he had concerns I would submit to an MRI. If he did not like the results I would add Copaxone to the regimen. I agreed willingly.

He also did not offer LDN to me, I had to ask for it. He also informed me he had 3 or 4 other people taking it. But he at that point in time was not sure whether they were having much benefit or not.

The best advice I can give you is to seek out a doctor who is willing to rx LDN. You can call Skips Pharmacy in Florida http://www.skipspharmacy.com/ and he will give you a list of the doctor's in your area that will rx LDN.

If you have any other questions or need more help, give a holler!
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lady_express_44



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

PostPosted: Tue Jul 11, 2006 11:05 am    Post subject: Reply with quote

Lolo, I think that for "whatever" reason, your Neuro is holding you at randsom.

There will likely NEVER be proper clinical trials on LDN, because the cost for trials prohibits them being done on a drug that there is NO MONEY to be made off of.

As Agate posted the other day, 21% of the drugs that are rx'd, are used off-label. We MS'ers use a number of these drugs already.

So, he's obviously got another (unknown) reason for not rxing it to you.

Cherie
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LoLo



Joined: 22 May 2006
Posts: 253
Location: Boston

PostPosted: Tue Jul 11, 2006 11:41 am    Post subject: Reply with quote

The problem is that I'm in the "Belly of the Beast" as it were, the midle of the medical establishment. He's a well respected MS neuro located at Mass General. He also is on boards of other MS organizations. He's been good, very meticulous, but he refuses to recommend anything "not proven". He feels he would be taking a chance with my health and is not willing to do that. As he says, he's seen more therapies come and go, and some were no better than snake oil. He's conservative (never a favorite attribute of mine!)and part of the establishment, so to speak. He does things by the book. He wants trials.

So.

My old neuro, also at MGH, MAYBE would've let me try it, but he is no longer accepting patients (I lost him when I relocated out of the area in 2001). I tried everything to get him back, but the desk gorgons would never let me near him. No was no, I left him, now I'm a new patient, and that was that. I adored him, he was the most wonderful doctor I have ever had.

He was my first neuro, one week after preliminary dx in the walk-in clinic at Mass Eye and Ear (I went over at lunch one day because of what turned out to be the end of a bout with ON, lights, camera, action...when the resident at the walk-in referred me for an MRI THAT day, I was convinced I had a month to live and a brain tumor. Nope - MS. It was actually a relief.) But can you believe it - I was dx'd in one day by a resident at a walk-in clinic.

ANYhoo - he's not holding me for ransom, just doing what the old guys do.
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lady_express_44



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

PostPosted: Tue Jul 11, 2006 12:04 pm    Post subject: Reply with quote

LoLo wrote:

ANYhoo - he's not holding me for ransom, just doing what the old guys do.


I'm sorry, I did not mean to talk your Neuro down by what I said; I meant it figuratively speaking.

It's a catch-22, if he is insisting there are clinical trials before he will rx, yet they will likely never occur . . .?

Does he rx other off-label drugs, like Baclofen, Ridalin (rx'd for fatigue) or antidepressants (rx'd for pain or fatigue). I bet he does, and that is why his argument just does not make sense to me.

There are ways of getting LDN if you really want it. Just as some people are saying about Tysabri . . . when their Neuro's aren't prepared to prescribe it. If there is a will, there is a way.

Cherie
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LoLo



Joined: 22 May 2006
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Location: Boston

PostPosted: Tue Jul 11, 2006 12:07 pm    Post subject: Reply with quote

True, but with my job I have to be particularly careful that everything is above board.

I understand about the other off-labels, but aren't they mostly for addressing sx? Whereas LDN is supposed to be specifically for progression.

It's a fine point, but I would wager that's the one they're hanging their hats on. But who knows. I just know I'm frustrated.
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Destiny



Joined: 22 Jun 2006
Posts: 52

PostPosted: Tue Jul 11, 2006 12:12 pm    Post subject: Reply with quote

LoLo,

Try Skips, those doctors are in your area. He will send you via fax or e-mail a list of rx-ing docs. That should, I would think, take care of the problem of it being above board for your work situation.
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lady_express_44



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

PostPosted: Tue Jul 11, 2006 12:14 pm    Post subject: Reply with quote

Yes, LDN's "claim to fame" is that it stops attacks and slows progression. But that is NOT the approach that most of use when we try to obtain it from our doctor's/neuros. YOU WILL NEVER CONVINCE HIM OF THAT, at least (maybe) until it proves to be true.

All of us have approached getting the rx on the basis of "symptom improvement" (which it "anecdotally" does accomplish the majority of times), just like all the other drugs we take.

Cherie
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Anonymous
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PostPosted: Tue Jul 11, 2006 1:02 pm    Post subject: Reply with quote Edit/Delete this post

I don't have a lot to add here, except to suggest that you keep trying, LoLo.

I approached my psychopharmacologist, who treats me for depression, with a request for a script (since LDN elevates endorphin levels, improving mood for some people). He had no problem with prescribing LDN for me, and even shared that since the track record of currently available ADs is so disappointing, current thinking in the profession is that a new avenue of research needs to be opened up, most likely the beta endorphins!

As it turned out, my PCP would have prescribed LDN for me too.

My neuro, on the other hand, laughed himself silly when I told him I was taking LDN. Insulting little pipsqueak--he is so fired!

zenna
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lady_express_44



Joined: 22 May 2006
Posts: 1314
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PostPosted: Tue Jul 11, 2006 1:28 pm    Post subject: Reply with quote

zenna wrote:

My neuro, on the other hand, laughed himself silly when I told him I was taking LDN. Insulting little pipsqueak--he is so fired!

zenna


LOLOLOL!!!!!!!!

Cherie
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Destiny



Joined: 22 Jun 2006
Posts: 52

PostPosted: Tue Jul 11, 2006 1:30 pm    Post subject: Reply with quote

zenna wrote:

My neuro, on the other hand, laughed himself silly when I told him I was taking LDN. Insulting little pipsqueak--he is so fired!

zenna


Okay I'm laughing! I know it's not funny when they do this crap to us, but your last statement had me busting a gut here!

You be sure and give him Hell before you fire the little pipsqueak, will ya PLEASE!
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