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Old 08-17-2009, 07:26 AM
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Dejibo Dejibo is offline
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Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
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I have lesions on my optic nerves, and suffer from the heat visually as well. I have Uhthoffs syndrome (sp?) and when I over heat my vision goes wonky. i dont go blind per se, but I get fuzzy vision. Lets say I was out for a nice brisk walk, and got over heated, it would be like someone smeared vaseline on my glasses. I could tell you that a large golden colored car past me, but couldnt tell you what make it was, nor the license plate of it. I can make out the blur of where the road is, and where the grass is, but cant see sticks or trash that I am about to step on, unless its brightly colored. I am told this is rare for MS patients, and some have it with or without lesions.

Normal everyday heat makes me feel like I have run a marathon. my body wont co operate. I go into slow motion and feel like I gain 100 pounds. I feel wrung out, and if I dont cool off I can get confused, and disoriented.

I will say that being on copaxone (for me) makes these sx worse. When I was off copaxone, I tolerated heat a bit better, and had more energy. I will admit it was beautiful weather during my 2 weeks off, so that is hard to judge.

I find if I push myself past the point of comfort, I can end up with diarrhea, tummy cramps, confusion, severe exhaustion, my legs turn to jelly and feel like they wont hold me up, and I will spend the next 3 days recovering from the event. It will be like I am recovering from a marathon.

btw the humidity is what really throws me. I can deal with some heat, but make it muggy, and I go down like a sack of potatoes.

It varies for each person. Some folks just get wobbly, and tired. Others get the full boat of sx like me.
__________________
RRMS 3/26/07
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Betaseron 5/18/07
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Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
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"Thanks for this!" says:
dmplaura (08-18-2009), Koala77 (08-17-2009), notasperfectasyou (08-17-2009)