How long have you had MS?

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How long have you had MS?

Postby bee4357 » Mon Jun 15, 2009 4:41 pm

Hi everybody. I just found this forum and thought I'd ask a couple questions that have been bothering me for a while.

I wondered how long a person with MS can function "normally." (Please no snide comments about what "normal" is....) I mean, I've heard some people who've had it for 12 years and who seem fine, and others who've had it for for only a year who can barely function. Does it tend to get better with time, once you find the best medication for your particular situation, or are some cases just more intense than others? Anyone want to share how long they've had MS and maybe a little of the path they've traveled with it?
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Postby Loobie » Mon Jun 15, 2009 5:23 pm

It's as varied and different for everybody as you could possibly imagine. For some people the meds seem to work. For others, not so much. It is a bad thing to start 'comparing' notes, except for how you deal with a specific problem, like bladder issues for instance. None of us has any idea of how intense, or what symptoms we'll get. You can only take any stock in your own case if after about ten years or so you seem to have a mild case. Then you can probably infer that you will have a mild course, BUT not always. and on the other side of the coin, if you seem to get hit with a relapse 3 or 4 times a year, maybe yours is more aggressive. There are just so many, many exceptions. It totally depends on lesion location and size and all of that. So to compare how you may do as opposed to somebody else, you'd have to compare MRI's and everything. And even then you don't know if you're going to form new ones at the same rate; if at all.

Even though we share many symptoms and collaborate on how to manage them, asking "do you think this will happen or that?" based on their own experiences is pretty scary since each case, in terms of speed and progression, is so different. It really is all over the map. You can read about someone who has been diagnosed for twenty years who still takes a walk after dinner every night, and conversely you can read about someone who's been diagnosed a year and is in a chair. I don't want to come off as a downer to your question, but nobody can answer that with any type of certainty whatsoever.
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Postby Bubba » Mon Jun 15, 2009 5:25 pm

Welcome Bee.....
I had some slight symptoms in feb 09. (slurred speech, droopy left side of my face, ect...) After several test at the hospital, they diagnosed me with MS. I had one doctor give me a "2" on the EDSS scale. When I asked how long had I had MS, one doctor told me that I probably had it for about 15 years. The next doctor told me that I probably have had it for a year to a year and a half. So????? Who knows. After reading and educating myself, I can date the extreme tiredness symptoms back to about a year and a half. My Exsacerbation (sp) lasted about three weeks. I started Rebif within about one month, and knock on wood, havent had any side effects nor relapses. But then again, this is fairly new to me. I do notice with my diet, that if I take in gluten laden foods, I seem to get the tiredness symptoms really bad. When I obstain from eatin gluten, I have virtually no problems. The only VERY negative side effect I still have is the inability to urinate. I now have to self cath. That is my short answer to a very huge and complicated question. :D You will find 100 people with MS and 100 different scenarios, everyone is different. I know the not knowing "what the future holds" for each individual stinks. However, Welcome to TIMS...
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Postby Lyon » Mon Jun 15, 2009 6:02 pm

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Last edited by Lyon on Sat Nov 26, 2011 12:53 pm, edited 1 time in total.
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Postby catfreak » Mon Jun 15, 2009 6:14 pm

Hi Bee!

The guys are right, no way to predict was MS will or will not do. I think we all just take one day at a time and live the best life we can under the circumstances.

My 2 cents!

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby bee4357 » Tue Jun 16, 2009 7:52 am

Thanks for your input, everyone. I guess I'm still just trying to quantify things.... Bad idea, I'm sure.

But yeah. One day at a time sounds like a good idea. ^_^
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Postby Bubba » Tue Jun 16, 2009 9:04 pm

bee4357 wrote:Thanks for your input, everyone. I guess I'm still just trying to quantify things.... Bad idea, I'm sure.

But yeah. One day at a time sounds like a good idea. ^_^


Not a bad idea, just natural.... Remember, one day at a time! :D
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Postby EyeDoc » Tue Jun 23, 2009 6:59 am

bee4357 wrote:Thanks for your input, everyone. I guess I'm still just trying to quantify things.... Bad idea, I'm sure.

But yeah. One day at a time sounds like a good idea. ^_^


I have "had" MS for 6 years now and I am still trying to quantify things! Don't feel bad about it. Just don't drive yourself crazy over it.

Nobody can tell us what the future holds. Try to find happiness in your everyday routines, be they affected or not.
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