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Old 09-10-2013, 02:50 PM #1
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en bloc en bloc is offline
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Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
Default Mestinon

Hi all,

As many of you know, I suffer greatly from autonomic neuropathy/dysautonomia. My condition has progressed (after 17 yrs) to the point of difficulty maintaining an upright position (particularly standing still) due to my BP dropping. This means simple tasks like grocery shopping, standing in the kitchen cooking, etc are challenging. I have made numerous life style changes to include using a scooter in public places, shower chair, sitting while brushing teeth, fixing hair, dressing, etc. But you just don't realize how much you stand upright until you can't do it any more.

I also have severe heat intolerance (which will compound the BP issue within 2-3 minutes). Of course I have the other autonomic dysfunctions with high & low heart rate (have pacemaker), urinary difficulty, cardiac vasospasms, gastroparesis,etc.

I have tried numerous supplements mentioned here as well as the common meds like midodrine, florinef, beta blockers, calcium channels blokcers...the list goes on.

I have seen a new neuro that specializes in autonomic neuropathy (very few of these docs) for evaluation of treatment with Mestinon. The Mayo Clinic has found this medicine for MG helps BP, and GI motility in patients with severe autonomic neuropathy.

I wonder if anyone here has used it and whether they had improvement with any of their symptoms?
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