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?

My heart goes out to you.I hope you can try the medicine and get some quality of life back .

I have no experience or expertise to offer myself, en bloc, but when I called up your posting I noticed four links at the bottom of the screen for threads having to do with Mestinon. They seem to be on the Myasthenia Gravis neurotalk forum. I think some treatments and tests for that condition are also used for peripheral neuropathy, so there MIGHT be relevant postings there. In any case, I'm glad you've finally made contact with a specialist in autonomic PN, and I hope you'll find something that will help. Your story puts my whining about not being able to walk very far into perspective.

Mestinon is, in fact, used primarily for MG. They have since found it helps with autonomic dysfunction.

Thanks for the thought about posting on that board. I had thought about it, but I don't have MG. Being that autonomic neuropathy is a facet of PN it seemed appropriate to post here where others with autonomic issues would read or post.

It's not widely used for this purpose yet, so I'm not surprised that I didn't any specific replies from others using it.

en bloc,

I sincerely hope this medication will help you.

Mary

I may not even get to try the medication, Mary. It appears this doctor wants to write a paper for a trial and wants me to stop ALL my cardiac medications and repeat ALL autonomic testing...even indicated my pacemaker may skew results, so may want that turned off too.

After 17 years of testing and retesting (mostly because docs like their OWN tests), I'm done testing. I struggle too much to travel 3 hours each way for another long battery of tests in multiple trips. The Mayo Clinic determined I have dysautonomia/autonomic neuropathy 16 years ago and I have had numerous doctors confirm this in Dallas and here in VA. Actually, this guy doesn't question my diagnosis, he just wants all new tests for HIS paper...he let it slip when I questioned the reason for retesting that he "can't write a paper without proper documentation using HIS controls". I don't know how some of these docs get through the door with the size of their egos...LOL

So much for patient care being a top priority. Actually, I would gladly participate in documenting a trial of this drug...IF he used my previous testing. I have done many research programs at JH for Sjogren's, so willing to help future patients for this as well...but not at a risk to myself. I can't go a few hours without my BP med...much less the week he requires. My cardiologist will likely not approve this action anyway.

I became real 'interesting' to him when my BP dropped during his exam (33 systolic points upon standing)...EVEN though I had taken my medication. Clear signs that my current regiment is ineffective. That's when he started with the retesting...off meds. Prior to that he was fine with my records of previous testing.

I'm just trying to gather as much info about this medication as I can (in use for this condition). Apparently, not many people have used it.

En Bloc... In my monitoring this site I've always noticed how kind you've been replying to other's questions with the best knowledge you have, albeit from your misfortune dealing with various neuropathies. I don't have any input for you but do wish you the best as you search out this issue.

en bloc,

You will be a special part of my journey. You are one of the few members who responded to me when I joined this forum. Inspite of your own challenges, you share your knowledge and information so that others can benefit from them. Even if you have no answer to my question, you make it a point to chime in just to let me know that you read my post. I appreciate that very much.

I joined another forum, where you are also an active participant. Though, I am not a regular "visitor" to that forum but when i had a question, you helped me out find someone who can answer me. thank you.

Mary