New to this site - Multiple Sclerosis Message Board

MarissaC8 · 04-08-2006, 12:03 PM

Hi, I am new to this sight. But, I am glad I found it. I was diagnosed with MS 1 yr after my daughter was born 5 years ago. I was 21. So far I have been lucky and have only experienced minor tingle sensations, slight memory loss comes and goes, etc. I really haven't had a bad relapse that has done permanent damage. But, how do I know if I am having a relapse or just symptoms. I am feel so weird. Shakey, confused, & out of sorts. I cant hold things with my left hand. Have a hard time typing this even. My leg feels like there is a rubberband around it, the skin feels tight and stiff. I don't want to jump the gun and get treatments if, I don't have to. What if I wait too long and end up w/ permanent damage? I feel like my husband doesn't understand either what I am going through. I hope I find someone who does in here.

orngcrayon · 04-08-2006, 06:48 PM

Hi Marissa! Welcome. You'll definately find people here who relate - I do!

I was diagnosed at 21 too! I'm glad things have been pretty good for you so far. Hopefully they'll stay that way! I think the biggest difference between symptoms and a relapse are whether you've experienced those symptoms before or not. If it's symptoms that you had in a previous attack, its probably not new disease activity. But if it's new symptoms (like tingling on a new part of your body, or memory problems you havent had before) then it's time to get checked out.

I do have some symptoms left over from my first attack - weakness on my right side, some memory problems... but this month i've been overwhelmingly tired, and had tingling in my left foot, so I went in. My neuro said it could definately be new activity... so into the MRI I went! It's kind of a hard call to make, but you should never hesitate to call your neurologist. And running more tests never hurt anyone (as long as you have insurance), so might as well get things checked out.

Your having these symptoms now? I have that rubber band thing on my legs and arms whenever I get hot, but only on my right side (affected by my first attack).

Here's what I know about permanent damage - studies show that even if you treat an attack with steroids, the treatment doesn't affect your future level of disability. So the treatments may make you feel better faster, but they don't decrease the liklihood of permanent disability. So outside of your current discomfort, I wouldn't worry about waiting too long. Although it's always nice to know whats going on, even if you opt not to have treatment.

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lilc · 04-08-2006, 07:12 PM

Marissa, I read your post before you shortened it, didn't have time to reply. You mentioned parkinson's, do you have tremor? I was diagnosed with tremor about 15 years ago, dx'd with MS 6 months ago. While tremor can be pretty disturbing, the tremor most often associated with MS is the opposite of parkinson's tremor. "Intention Tremor" (aka Benign Essential Tremor, Benign Familial Tremor, non-Parkinson's Tremor) gets worse when you use your muscles. Parkinson's is worse when the muscles are at rest. The most important thing for me in controlling my tremor is to relax.
Are you on any of the CRAB meds? My symptoms are more annoying than debilitating (numbness/tingling, fatigue, cognitive difficulties) and I still work and travel a lot. I didn't expect my neuro to recommend injections when she said I had "mild" MS - but she told me that starting the meds as early as possible could prevent or delay permanent damage. I've been on Copaxone since November, and actually think I'm doing better than I was a year ago.
I do have what seems to be permanent numbness trouble, but it is fairly minor. I'm really trying to avoid disability. Talk to your neuro, don't wait.

MarissaC8 · 04-08-2006, 08:22 PM

Hi Orngcrayon and Lilc,

I have always had symptoms in my legs and hands, but never this shakey, and the rubberband feel is new. It is only on my left side. The shakes get worse the more I do. Then I have been having some vision problems more in the right eye, also not something new as I get new lenses at least 3 times a year. I do take Avonex. I saw my Neuro on Friday for a normal checkup, she is doing another MRI as I haven't had one for 3 years and she just wants to compare. However, she doesn't want to do treatment right now because I missed one shot and then took the next one 3 days late. So I went 10 days without drugs. I was on Copaxone and then Betaseron. I feel Avonex works best for me and my lifestyle.

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Right now, I am sad. I feel am worried about my mobility in the future. I don't know, I think those feelings are normal.

Thanks for the help.

moderator2 · 04-20-2006, 10:04 AM

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