Questions to those with SPMS

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Questions to those with SPMS

Postby Filmmaker » Tue Nov 01, 2011 5:44 am

Hi
I was wonder about SPMS , how fast did your disability progress? I mean can you say that after one or two years, you couldnt walk anymore, or use or hands, or speak clearly... Also, did you feel that at some point it stopped progressing, maybe some symptoms even got better?... Thanks for your help!
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Re: Questions to those with SPMS

Postby laetoli » Tue Nov 01, 2011 6:14 am

Wow, an invitation to have a little whinge!

I was diagnosed SP in 2007. I haven't a relapse for years, just a slow and steady deterioration. I can still walk with a forearm crutch but after some distance, which varies, it a gets to be an effort, really a lot of effort, to move my legs. This improves with rest but as the months and years move on, the distance reduces and the amount of rest my legs need gets greater. I've got some spasticty and annoying spasms particularly in bed at night. I've got bladder, bowel and sexual dysfunction, though all three vary and all are manageable. My left arm is a bit weak. Did I mention that my balance is crap?

Best,
Paul
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Re: Questions to those with SPMS

Postby selkie » Mon Dec 05, 2011 12:18 am

Hi,

I've had SP since 2002. It has definitely progressed though the main symptoms have varied over the years. I seem to be SP with relapses but I never recover my base line.

In 2002 I wasn't walking with a cane. That started about 2005 and since then I can get by with a cane but now I do better with a walker for long distances. I'm fortunate I'm not in a wheelchair as other people I know diagnosed about the same time progressed rapidly and are in wheel chairs now.

I don't suffer from slurred speech (knock on wood) though sometimes my words come out a bit slurred or the wrong word altogether. Cognitive problems, pain both spasms & nerve pain, and balance problems have increased dramatically, but I'm thankful I'm not in a wheel chair.

A few years back and recently (as in one of my other posts) MS has attacked my bladder. My ability to exercise is practically nil making weight gain a problem - as well as depression.

I think SP is different for everyone. I've heard but I'm not sure how accurate this is, that if one isn't in a wheel chair after five years, chances are good it won't come to that. But seriously I think doctors & researchers are guessing much of the time as MS is unpredictable.

Good luck to you and I hope in your case the SP is slow to progress. Relaxation exercises & keeping stress to a minimum, and if you have a support system that's helpful - I know that's easier said than done. For me being compassionate toward my body has been a challenge but I'm trying as I want to remain as independent as possible - I'm sure we all do.

Take care & best wishes, selkie
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