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Old 06-29-2013, 08:52 AM
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cait24 cait24 is offline
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Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
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cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
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I have all the classic MG symptoms, weakness relieved by rest, chewing problems, swallowing problems, double vision, ptsosis. But I also have other symptoms that are not classic but I have found some explanation for them. I have the chronic tininitis that never goes away in 2 years (relieved for 24hrs on 5th day of IVIG) and hyperacusis. I have found several other MGers complaining about this and some explained that there are small muscles in the ear regulating pressure which could account for the symptoms.

On bad MG days my memory and attention span is shot. I just figure I am concentrating so hard to walk or swallow that my brain cannot handle anything else.

I get the muscle fascilation and trembling when the mestinon starts wearing off particularly in the morning and it is intiated by the smallest movement. If I get up and take more mestinon they subside. I get them during the day as the mestinon wears off too but not as bad, since I am only 4 hr from a dose instead or 8 or more hours at night. i also break out in profuse sweats as the mestinon wears off. This is relieved also by taking more mestinon. I attribute both these symptoms to the extreme weakness due to mestinon wearing off. It is like the feeling you get before you pass out, when you break out in a profuse sweat and all your muscles tremble with weakness.

I also have dizziness and vertigo and chronic diarrhea that waxes and wanes with the MG.

My hands and feet are so clumbsy due to weakness. My left side particularly is useless. I am a mess in the kitchen. I knock everything over and break things. I cannot flip an egg or a pancake. I cannot even count the number of times I spent making dinner and it ended up on the floor. My body does not move in the way I instruct it to with disasterous results. I have had several fall. And a couple of times when my legs would not move at all, one of them was while driving before mestinon. I have to schedule my entire day and activities around my mestinon schedule so I do activity when I am strongest. I take mestinon 1 hr before leaving in the morning for work and before returning home so I am strong enough to drive.

I think all the symptoms are MG related. Mestinon only works 3 hrs for me. I am going to ask my neuro to take the same dose every 3 hr so I do not get so many ups and down and have a more constant level.

Good luck with your neuro appointment
kathie
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