Is this "normal" for MS?

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Is this "normal" for MS?

Postby Samantha » Mon Apr 16, 2007 4:21 pm

I was diagnosed in the summer of 2005 after ending up in the ER unable to speak although I was seeking answers to my symptoms since 2002. Since the attack in 2005, I have regained most of my speech (still slur some words) but have other issues such as right-sided numbness and muscle stiffness including a slight facial drop, some difficulty with my handwriting and issues with my right foot that cause minor gait problems. I work 9 hours a day and nothing really prevents me from doing what I need to do. However, I often wonder if I am worse than the average MS patient after only 5 years of living with this disease. It seems that a lot of what I read gives the impression that the majority of those with MS are living close to normal except when they are having a relapse and often recover completely. My neurologist says I am doing well even though I had a few new lesions in only 11 months while on Rebif. Is this the norm for MS?
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Postby scoobyjude » Mon Apr 16, 2007 4:53 pm

Samantha, what you've described sounds very normal to me. I consider myself to be doing very well yet have many of the same problems you do even when I'm not in a relapse. I sometimes have numbness and gait problems when I've overdone it and stiffness is a problem I have almost every day. I too am on Rebif and have had MS for about 5 years. I also work full time and these symptoms do not prevent me from living a fairly normal life. Right now I consider myself lucky to have symptoms that are mostly mild. I try not to overanalyze anything though. I think it would just drive my crazy.
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Postby Loobie » Tue Apr 17, 2007 4:39 am

I think a lot of time we expect more recovery after a relapse. I think that when the relapse goes away, the disease activity may quiet down, but in my case, my stuff stays. I don't know if that makes me progressive or not, but I imagine being progressive doesn't give you those times when you have this bag of symptoms with nothing getting worse, you only see decline.
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Postby Samantha » Tue Apr 17, 2007 3:16 pm

Thanks for your posts. It is very reassuring to know that others can relate. I was fearful that not making a full recovery was an indication of a bad prognosis.
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Postby gwa » Wed Apr 18, 2007 7:25 am

Samantha,

During the relapsing phase of MS, I never made full recoveries. My balance and leg weakness have been with me from the beginning and never got better. Over time these two problems continue to be my worst symptoms.

When I started reading posts on the internet about 10 years ago, I was surprised that some people wrote that they recovered fully between attacks.

Now that it is understood that neurological damage is ongoing from the start of MS, it would appear to me that not recovering fully is more the norm.

gwa
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Postby Loobie » Wed Apr 18, 2007 7:30 am

I think that is one thing that is really misrepresented with this disease. GWA is right, I thought the same thing. That there were people who got "knocked down" by a relapse and then went "back to normal". It really isn't that way in anyone I have talked to; there always seems to be residual damage.

I don't know if it's the term or what, but somewhere along the line I got the same impression. I sure understood the relapse part but was always left holding the bag waiting for the remitting part!
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Postby Niko » Wed Apr 18, 2007 7:50 am

Loobie,

You are right. I may have the label of Relapsing-Remitting... but, after my first attack, I never returned to what I was.

I have a flare-up and after I feel a litter better.

Niko
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Postby Muu » Wed Apr 18, 2007 9:46 am

Yes all this ms labelling can get confusing. I suppose the only time it's important is when it comes to treatment. over here in the uk you are automatically ruled out for nearly all treatments, if like me you are SPMS, unless you are on a trial. The options are greater over here if you're RR. I'm in fairly good shape after over 20 years of ms. I can't congratulate myself too much - I think the path ms can take is so variable from one person to the next and nobody is clear on why it should be so.
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Postby Samantha » Wed Apr 18, 2007 3:45 pm

I am very fortunate to have found this site. It seems that a lot of the information I found describes MS as an inconvenience for most and debilitating for a few. I certainly do not want to exaggerate my condition as I do function pretty close to normal. However, it is not without some kind of daily struggle. Slurring your words occasionally while on a call at work, having difficulty writing the address on an envelope or the frequent lightheadedness may not necessarily be debilitating but dealing with such symptoms (or maybe worse) every single day for the rest of your life is more than an inconvenience. It is obvious now I am not alone in this.
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Postby stevericc » Wed Apr 18, 2007 7:48 pm

Thank you all for your postings. This is perhaps the area I also am the most confused about or was more so when diagnosed last year.Like quite a lot of people I fall into that category of probably having my first attack about 20 years ago, undiagnosed ,a life time of confusing and puzzling problems and then MS waking up full-blown after 20 years or so of lurking.
I was also confused about the concept of relapse and remission. It was presented to me like having the flu for a few weeks and then suddenly you recover until you get sick again.
I liken it more to a brush fire or locusts moving through a field and leaving a trail of permanent damage. In the year since I was diagnosed I havent had a single day without some symptoms or disability. And bit by bit some things get worse. Very frustrating, but comfort in knowing we are not alone.
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Postby missvicki » Wed Apr 18, 2007 10:30 pm

I too have residual symptoms even tho I'm in "remission". My last relapse was 2 1/2 years ago and I'm reminded everyday that I have MS. :?
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