What would you say to somebody just diagnosed with MS?

 
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agate
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PostPosted: Sun Jul 02, 2006 3:10 pm    Post subject: What would you say to somebody just diagnosed with MS? Reply with quote

I got this idea from another message board. It seemed like an interesting topic.

I'll start off. What I would say is exactly two words: Slow down.

I heard that back when I was newly diagnosed. I was hurrying along on 71st Street in Chicago, walking toward the post office or the hardware store, and there were quite a few people on the sidewalk. Suddenly I heard a guy call out to someone (not me, I'm sure): "SLOW DOWN!"

I felt as if it had been said to me though it hadn't, and ever since then I've been reminding myself to slow down.

It should have been said to me, and that's what I'd say to anyone newly diagnosed with MS. It's been the most helpful bit of advice I've ever had.
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lady_express_44



Joined: 22 May 2006
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Location: Vancouver, Canada

PostPosted: Sun Jul 02, 2006 4:11 pm    Post subject: Reply with quote

I really like what was written in that post you referred to in your opening post, Agate, and I hope the author gives us permission to quote it (with credit) in other places on the net. Maybe a book is in order?

I wrote the following a long time ago, and have used parts of it on other boards:

1. The first year after dx is the most emotionally difficult, for the entire family. There is a lot to learn, and often the Neuros do not give us much time to decide on a course of action.

2. I recommend that a new PWMS do their research before agreeing to any treatment plan. At the end of the day/week/month, it is very likely many of us will go along with our Neuro's suggestions for medication, but it is important to process our grief (shock, denial, etc) and research the options first.

3. When we are in an attack, the lesions are usually inflammed (enhanced on a MRI), and we are experiencing 'short-circuits' in our bodies. Once the attack dies down, the lesions become plaque (scar tissue).

4. Steroids are used to hasten the recovery from an attack, but they do not improve the degree of recovery, and they do not prevent the next attack. There are plenty of side-effects that must be weighed out before starting on steroids, or the CRABs. For steroids, the list includes:

5. There are 4 mainstream disease modifying drugs used for RRMS . . . all of which are administered via injection. One is Copaxone, and it's active ingredient is Glatiramer acetate. It is known as a immune stimulator or enhancer.

The other three are Rebif, Avonex and Betaseron. They are interferons, and are known as immune suppressors. In short, the four of them are (lovingly) referred to as "CRABs" or "ABCR drugs", by using the first initial of each drug name.

6. There is also a non-mainstream drug option, with a very good reputation amungst MS'ers, called LDN (Low Dose Naltrexone)

7. MRI's are one tool used in the dx, and the lesions located are the "proof" that we have MS. They are not the be-all, end-all as far as monitoring disease progression.

Many MS'ers continue to progress in disability, without more lesions showing up, and without any further relapses. That is why it is not necessarily wise to evaluate the efficacy of our drug options by looking at our MRI and/or relapse reduction results.

All treatment options should be based on how we feel on them, and more importantly, whether our disability continues to progress.
______________

The process:

1. We have "new symptoms, or worsening of old symptoms, that last beyond 48 hours"; this escalation phase of an attack/relapse/exacerbation, lasts normally anywhere from 1 to 6 weeks.

2. We then go into an attack 'recovery' phase, whereby our symptoms start to subside. Recovery lasts anywhere from 0 weeks - 2 yrs.

3. After full recovery, we may be left with some lingering/ongoing 'permanent' symptoms, or we may FULLY recover.

4. We will likely have another attack (and go through points 1 - 3 again).

**We also have flare-ups/fluctuations that will last for 0 - 48 hours, and occur usually as a result of stress, fatigue, heat, etc.

**We NEED to learn to listen to our bodies and avoid the triggers that set off the symptoms. Most IMPORTANTLY, avoid infections/a rise in body temperature.

**When symptoms occur for longer than 48 hours, we should first be checked be for a UTI/bladder infection. Bladder infections are very dangerous for MS'ers (see site link in the "Symptoms" thread, under "bladder").

**An attack is not recognized as a new attack, unless there has be a 30 day break since the last attack.

___________

What to expect, in the longer term:

This disease is falls into a "hope for the best, but plan for the worst" scenario . . .

- we live a life of "unknowns"; "if" something will happen; "what" may happen

- we live almost a normal lifespan and won't die from MS

- there is a slightly higher chance that our children will be born with MS

- the vast majority of us never end up in a wheelchair

- we didn't cause this disease, and can only 'manage' the symptoms; rest, avoiding stressful situations and infections, drugs, etc.

- the symptoms are highly variable for each of us

- the disease can be fairly benign, or very aggressive . . . usually the first five years will give an indication of the prognosis

- it is progressive; we will get worse, to some degree, eventually

- most of us have attacks (where we don't function well), then remissions (where things are 100%, or with some ongoing obstacles)

- many of us are happily married, to someone who is loving and empathetic (required characteristic for our mates)

- some of us can not continue working after some time with the disease, or at certain times during the process, but others continue to work throughout their lifetime
_____________

ALL OF THE ABOVE IS MHO ONLY!

Cherie
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agate
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Joined: 17 May 2006
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PostPosted: Sun Jul 02, 2006 7:20 pm    Post subject: Reply with quote

Thanks for your contribution to this thread, Cherie.

I'm not sure what you mean about that post I referred to in my opening post. I was referring to an idea I saw going forward on another board--I can't recall which board, and I don't recall any particular post there. Would you mind sending the post you're talking about to me by PM, Cherie?

I wrote the entire post that opens this thread. I didn't take it from another board. If I had taken it from someone else, I would have made clear that it was a quotation and given credit to the author.
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lady_express_44



Joined: 22 May 2006
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Location: Vancouver, Canada

PostPosted: Sun Jul 02, 2006 8:09 pm    Post subject: Reply with quote

agate wrote:
I'm not sure what you mean about that post I referred to in my opening post.


Yesterday, someone on BT posted a thread about what they've learned in the last 31 yrs with MS. It was a totally AWESOME and thorough posting; so much so that I had asked him if he would mind if I used/copied his words in the future.

His posting got me to thinking that I wouldn't mind opening a thread like that, on my board. So when you said you got an idea off another board, I just thought you and I were thinking the same thing at at the same time. thumbright

agate wrote:
I wrote the entire post that opens this thread. I didn't take it from another board. If I had taken it from someone else, I would have made clear that it was a quotation and given credit to the author.


I did not think that you had. scratch

Cherie
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Snoopy



Joined: 23 May 2006
Posts: 195

PostPosted: Mon Jul 03, 2006 5:23 am    Post subject: Reply with quote

My neuro told me....
Keep walking and live your life as normally as possible. It's helped me thru the years to deal with my MS.

Remissions are real but that does not mean you will not have any symptoms....residual symptoms are common.

The Rocky Mountain Multiple Sclerosis Center (Colorado)started a thread on this topic a few months ago.

Agate slowing down is the one thing I still have trouble with but I think it's important to do.
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LilDarlin



Joined: 03 Jul 2006
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PostPosted: Mon Jul 03, 2006 8:10 am    Post subject: Reply with quote

Hello everyone,
I just registered here today. My 22 yr old daughter was dx'd with RRMS last summer and this has been an interesting year.

Slow down is a great suggestion, as well as doing your homework and not totally relying on neuro's and Dr's for info.

I lurk at braintalk and at MSW, and have met some wonderful ppl online who have been great support through this new chapter of our lives.

Just wanted to say hello,introduce myself and say thanx for this thread. I'll have to look for that posting at braintalk from the guy with 31 yrs experience.. Does anyone know the direct link or what the thread was?
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agate
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PostPosted: Mon Jul 03, 2006 9:00 am    Post subject: Reply with quote

LilDarlin, it's still on page 1 and is called "39 years of sx..." by ScootermanIV.
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LilDarlin



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PostPosted: Mon Jul 03, 2006 9:37 am    Post subject: Reply with quote

Thanx, So very much.
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