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Old 06-08-2013, 04:27 PM
Nancy T Nancy T is offline
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Join Date: Aug 2006
Posts: 191
15 yr Member
Nancy T Nancy T is offline
Member
 
Join Date: Aug 2006
Posts: 191
15 yr Member
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Hi 4-eyes, thank you for the response and the info. I don't think it's spasticity because I don't have any trouble to START walking, which I would imagine (?) it would be if your muscles were spastic. But I don't know that for sure. It's definitely not a matter of becoming weak and wobbly; I do get tired after not too much activity, but it does not feel like actual WEAKNESS, there's no danger of falling or collapsing. It's really just like you've used a muscle too fast and too hard and it burns, you can't go on without stopping to let it rest for a short while. So... I honestly don't know!

Unfortunately, MRI "spots" can be caused by things like high blood pressure, high cholesterol, migraines, and eventually just aging. I do have a history of migraine, though no problem with actual headaches (migraine can be painless and sometimes manifest mostly as dizziness). And apparently the "spots" are not in places suspicious for MS. So although they COULD be from MS, they are also seen in lots of people WITHOUT MS. The neurologists do not seem to think my MRI is particularly suspicious for MS.

Thanks very much for the encouragement to keep trying... when I see a new doctor, I do try not to burden them with all my history, but eventually they ask, or want my records, and once they see you've been worked up once (even if it was only a partial workup, or done long ago, or done by--in one case--a neurologist who did not care about getting things CORRECT, even my history and symptoms and specific points of fact) they just get this smile over their face and you can tell their thought process has stopped. I saw two "good" neuros in 2000-2002 but since then only the careless one, a couple of years ago. You really can't escape saying something about your history and previous workups... I do try to emphasize, and specifically ask for help with, merely my current problem, which is the walking, but so far I have not gotten anywhere on that front. I have a new PCP whom I see again later this month, so we'll see if he is interested... but after 14 years of symptoms I've run out of patience, so if he just gives me that smile, I am immediately going elsewhere.

Kathie, no I have never tried Mestinon. What you describe with your walking sounds pretty similar to mine, except that I CAN go pretty fast and easy for the first couple of blocks. Then with each subsequent effort, after a short rest, the distance and speed I can go get pretty quickly shorter. I use walking sticks when I know I'm going to have to walk any distance, and they help, but as time goes on I am still going downhill even with the sticks.

But you know, I wouldn't say I feel actual muscle WEAKNESS--at least I don't think it is--it's just FATIGUE and burning. I've had doctors and physical therapists test my strength many times (although never after repeated activity) and mostly it's normal. So... I just don't know.
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