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Old 08-20-2010, 07:41 AM #1
pchristopherbell pchristopherbell is offline
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Join Date: Jul 2010
Location: Horn Lake, MS
Posts: 4
10 yr Member
pchristopherbell pchristopherbell is offline
New Member
 
Join Date: Jul 2010
Location: Horn Lake, MS
Posts: 4
10 yr Member
Default Very long hard road and no answers yet Part 2

well on monday I will be flying to Mayo clinic in Florida to see one of their experts on MG. No one here is willing to say i have it but I think its all leaning that way. I do not have the eyelid issue, but I have had severe problems swallowing to the point of putting in a G tube. I had issues with it off and on for 10 years, lasting only few weeks at a time. Every doctor passed it off as all in my head and gave me xanax. Last august it turned on and didn't turn off. Right now I am at the point where when i first get up I can ear fairly decent and that gets to be less and less as the day goes by. I also suffer from terrible "I feel tired/fatigue", but a daily dose of prednison 5mg and tramadol 50mg every 4 hours prn really helps that, almost instantly. I was given mestinon to try 30mg BID x 3 days then 30mg TID. Funny thing is the pharmacy got mixed up and wrote on the lable to take 30ml BID instead of mg. I was at the worse in my swallowing so i could only take half of the mistake dose which was 15 ml BID so tech i was taking 120mg 3 times a day..........and I didnt have any side effects after a week and prior to that it was only my stomach seemed active. I failed the Electrical study they did in office but not enough for them to be comfortable saying I had it and my antibody test came back negative.

I know it sounds stupid but I really hope this is what i have, since I know i have something wrong I would prefer it to be this and not something worse or something they can not explain. I look forward to be being part of the community here if I get the diagnosis next week. So much to learn from the group here bout the practical side of day to day living.

P Christopher Bell, RN
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