Any MS patients or family of MS patients posting here at DU?

[blm]

My niece is at the stage where she has been bed-ridden since early Nov. and has lost control of even her eye movements. Can you give any insight to what to expect next?

I had hoped she would go to Canada as they are allowing the use of medicinal marijuana there and also marinol, but that is not going to happen.

[China_cat]

1. My son has MS

but he isn't at that stage yet. I'm sorry I don't have any answers for you as to what to expect next. I don't think anybody will as every case of MS is different.

[bicentennial_baby]

4. Exactly..

My dad has had it for 30 years...Every case is different, as far as I can tell.

[blm]

5. Thankyou for answering. Hopefully there will be options available for you in the US

before it advances. I have read good things about medicinal marijuana and Canada allowing it for MS patients.

[skygazer]

2. You might want to post in the Chronic Health Conditions forum

Just an idea. I wish you and your niece well. :hug:

[blm]

6. Thanks. I didn't know there was a forum for it.

.

[RedStateShame]

3. Friend of an MS patient. Actually, bandmate.

I know he takes good care of himself, takes medication and what have you, and he has a daughter on the way this month, and I've never really seen any, for lack of a better word, flare-ups of his MS. He was diagnosed with it about 3 or 4 years ago, and he's 30 now.

How bad does MS get, really? I know this sounds dumb as hell, but my buddy's not the type to gripe about something he can't really do anything about.

[blm]

7. She's in her mid30s and had been in a wheelchair for 3yrs now.

Bedridden since November, and it is heartbreaking to all who knew her as a vital, energetic person who was always on the go. She's the first person I've known in this stage of MS.

[RedStateShame]

8. I'm so sorry to hear that. My regards.

[blm]

9. Wishing well for your bandmate, too.

.

[Redstone]

12. It can be as mild as my last 29 years' worth, which is to say some balance problems

and heat intolerance, or it can be REALLY bad, and hit like the OP's niece, wheelchair and all that. And worse.

I've read that only 15% of people with MS ever end up in a wheelchair, but I can't produce proof of that.

It really is a crapshoot. I've had my remission for so long that I barely remember the really bad episodes (though I have three- or four-day "minor" ones now and again), but it could jump up and bite me any day...any one of those episodes could be the one that doesn't end.

You just REALLY never know. Wish I could offer better information.

Redstone

[bicentennial_baby]

19. Crapshoot indeed....

Here's to hoping I don't get it too :toast:

:hug:

[Redstone]

21. It's not always genetic. Nobody in my family except me has had it. Pure dumb luck, I guess,

although much of current thinking says that it originates with a viral infection.

My continued best wishes for your dad (and for you with your own concerns).

I'm still here for you.

Redstone

[bicentennial_baby]

24. Thanks sweetie

I have it on both sides...Dad and Grandma's sister...Although, she lived with it for 30-40 yrs, and died at 97 :D

:hug:

[Kat45]

10. There are different kinds of MS

Some folks have relapsing-remitting, which behaves just the way it sounds. Some have chronic/progressive, which just keeps getting worse. It sounds like that's the type your niece has. Has she been taking any of the MS drugs; they're supposed to help lessen it, but I don't know about them first-hand.

Edited to add, from prevous posts, I know that there are a number of DUers who have MS. Maybe one of them will see this thread and have some answers that can help you.

[blm]

11. Yes....she was diagnosed in late teens but it really started effecting her the last 7 years

with the last 3 in a wheelchair and last 3 months in bed. Just 6 years ago you would never know she had it if she didn't she tell you. Now, it's just constant suffering and as optimistic a person as she always has been, she is having trouble hanging on and, of course, talking of final relief. This is the part that is hard to handle as a family member, and why I am asking for insight here.

[Redstone]

13. If you think some marijuana will help her, give her some. Fuck if it's legal or not.

Redstone

[blm]

15. We have been.

None of us have gotten any highgrade stuff though and she's in the hospital right now.

If I still lived in LA, it would be easier, but I've lived in the South the last 7 years and it is a different world for me here - not much access to anything worthwhile. We get what we can for her.

[Redstone]

17. Meanwhile, fnd her some supplements or foods that are rich in sulfur

(or sulpher, or however it's spelled), then read a book titled "Electric Universe" to see why I recommend this. It's too involved for me to explain here, but sulfur (or sulphur or whatever) resides in the myelin sheath around nerves and plays an important part in the signal conduction in nerves.

Read the book and you'll understand.

Redstone

[blm]

25. Thanks for the extra insight, Redstone. Very much appreciated.

.

[Gormy Cuss]

16. I wholeheartedly agree with you on this.

I had a friend with a progressive form of MS and in his last years pot was about the ONLY thing that made it possible to enjoy the day.

[Guava Jelly]

14. My youngest sister has MS

She has had a few bad event's
But the disease hasn't reached your nieces stage yet.
I hope we find a cure for this.

[alarimer]

18. my sister has it

Or they are pretty sure she does anyway. She is 26. She starting taking a medication (that she injects herself) which is supposed to keep the attacks from happening. Hers comes and goes. I don't know the type that she has.

[Katherine Brengle]

20. I'm so sorry to hear that. My SIL has MS, but she's still very young

and relatively healthy for the most part (she's only 19).

I don't relish watching her suffer over the years :(.

[Redstone]

23. She may not end up suffering (see my post above). Some of us get lucky, and NOBODY

knows why. It's about the most random disease there is.

I do hope she ends up being one of the lucky ones.

Redstone

[blm]

27. It certainly doesn't seem to follow patterns as in other diseases.

I did alot of music industry fundraising for leukemia, cancer and aids. It was great to see the advancements year by year. I feel completely stymied on this one.

[Redstone]

28. Your frustration is shared by many. It's SO random. One correction: I've been in remission

for 27 years, not 29.

And on a lighter note, which I hope will cheer your up, here's a transcript of my conversation with my doctor, back in 1978:

----------------------------------

Doctor: I'm afraid that you have MS.

Me: So why does that make YOU afraid? (I really said that.)

Doctor: It's not funny at all. You need to take this seriously.

Me: OK. What's the treatment?

Doctor: A course of steroids. Intravenously. Then wait and see.

Me: Do you have a gun?

Doctor: What?

Me: I asked you if you have a gun.

Doctor: Why do you want to know?

Me: Because that's the only way you're going to make me let anyone pump steroids through my veins. My grandmother had a knee that bent backward because of the steroids they gave her for asthma.

Doctor: What if I did have a gun? (He was a cool doctor, so this was turning into a Marx Brothers routine...)

Me: Then I'll go get a gun, too. Do you have a cannon? You'd better bring one if you think you're gong to make me do this.

Doctor: No. No artillery.

Me: Then no. No IV steroids. I'll take my chances.

---------------------------------------

Redstone

[Katherine Brengle]

31. Great story lol. I know my SIL is on some sort of shots,

unfortunately we aren't close so I don't really know a lot about what's happening with her, but my husband told me that she has to take a shot every so often, so maybe that's what it is.

Disease sucks. My mom has fought off a couple of different cancers in recent years and it just sucks.

[WilmywoodNCparalegal]

22. I'm a possible MS case...

although I had every test in the book about 5/6 years ago (spinal tap, MRIs, etc.), the diagnosis was inconclusive. The symptoms were there (tingling in the extremities, lessened sensation in arms/legs, balance issues, areflexia) but no certain diagnosis was made.

I haven't had any tests of the sort lately, so I don't know if there has been any progress or a confirmed MS diagnosis.

I feel for your niece; sounds like she has the very fast and progressing type of MS and I am sure she feels hopeless. I can understand the feeling; where your body feels like doing what it wants, without you having any control over it.

:hug:

[blm]

26. Best of luck to you. Once you get a firm diagnosis, I hope you have every access

to what you need.

[khashka]

32. Same as you - inconclusive.

I have a whole host of symptoms - from progressive numbness and pain in the extremities to areflexia, balance problems, inability to track moving objects, unequal dilation of the pupils, muscular weakness, muscular atrophy, demyelinization of the nerves, loss of manual dexterity, "foot dropping" when I walk and the list goes on for miles.

But all the tests are "inconclusive". Which makes getting disability a bitch.

Khash.

[blm]

33. wishing you well....you've made me concerned whether it benefits anyone

to keep patients from the exact diagnosis if it means they need to get disability payments or insurance coverage. It's sad that thought should even enter my mind, but after living through these last 6 yrs of BushInc, it's unfortunately one of the first things that popped into my head.

[Malikshah]

29. Right here-- Dx'd in 2002

Male, 35 yrs of age. Started w/ numbness/weakness in right arm, left face, over span of 2 wks. Then waist down numbness-- didn't "walk funny" according to loved ones, but sure felt I did. Lost use of right hand for around 4 mos.
Put on prednisone and Avonex and that seemed to put it in remission Still don't have 100% in right hand. Had one relapse around 2004 Election (Optic neuritis)--personally blame it on stress, but go figure.
Right now in a relapse phase with the "hug" (numbness, heaviness in abdomen) Still on avonex, but planning on asking for prednisone at next Dr's visit.

Why the info? As other posts have mentioned-- this "Monster" as it's called by many on MS forums is still a mystery. Everyone has different symptoms at different times. Unfortunately, there are a number of "varieties" of MS. The most prevalent (85% IIRC) is Relapsing-Remitting. Other, more aggressive forms, are much more rare--5-10% of cases. The problem is that this is a condition that doesn't go away, but can and often progresses -- though the timing varies due to any number of factors...it's still all so hard to pin down. Thank goodness for the Interfuron treatments that came out in the 90s-- they've helped many from what I gather to slow the progression.

I'd been lax in the last year w/ the Avonex as I'd wanted my weekends back (it gives Flu-like symptoms for a day or so after injection-- my partner gives me the inter-muscular shot once a week)But now I'm as strict as can be, weekends be damned. The problem is that once its in remission in many cases, one can feel as if all is well. The symptoms appear, unfortunately, only after the damage to the nerve paths is done. Other treatments (Rebif, etc.) are every other day and sub-cutaneous. Tysabri's been on and off the market due to side effects.

A great site I've found is www.nmss.org . I used to go on the forums (hard to find the message boards on that site) but many of the posters tended to be a bit, shall we say, judgemental and/or red-state-like in their asides. On top of that, the conversations tended to be a bit Lillian Verner (i.e. MadTV gameshow parody) in tone and felt a tad out of place.

As a male, I still get strange looks as 2/3+ of those with MS are women.

Of course--there's the "You don't look sick" statements that I let blow over. Nothing like cognitive issues (words escape you) and occasional slurred speech during a relapse to remind you.

I am so sorry to hear about your niece, blm-- this does appear to be a severe case--my thoughts are with you all.


THNKS BTW-- for the info about the chronic condition forum! More info is always great and the environment here is soooo much more supportive and conducive than some message forums related to MS I've come across.

[blm]

30. I completely get what you're saying. My niece is surrounded by red-state mentality

where everything is dealt with a rosary and prayers.

She is a liberal like me, and we are a minority in my family. Her Repub father, though, does approve of her having marijuana to help stabilize her, but is fascist enough to not get that he voted against legalization of marijuana for medical purposes in 2004.

[mr blur]

34. I have MS - Secondary Progressive

I'm afraid it's not easy to second-guess this fucking disease or even to anticipate its progression. What type of MS has she been diagnosed with?