Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 05-20-2014, 12:11 PM #1
Unsure81 Unsure81 is offline
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Join Date: Apr 2013
Posts: 81
10 yr Member
Unsure81 Unsure81 is offline
Junior Member
 
Join Date: Apr 2013
Posts: 81
10 yr Member
Arrow Update....the results are in....

....and as I suspected the SFEMG was negative! I finally received the results by letter yesterday.

However, whilst my Neuro is not prepared to trial steroids without any evidence to support the diagnosis.....(which I do understand)...he is still sticking to a diagnosis of "Clinically Possible Myasthenia Gravis" he said the negative results for Myasthenia were frustrating and he knew that I would be disappointed. He is happy for me to continue with Mestinon and said that if he can be of any further help with my management he is happy for my GP to contact him any time. He did mention (again!) the possibility of seeing a Cosmetic Surgeon as the only other course of my management that deviated from MG....which I will not be pursuing! It was nice not to have my sanity questioned in any way or be told I have a "Functional" weakness....I think my Neuro really believes that I have MG but is under guidelines and restrictions which prevent him from giving more aggressive treatments without a test to back it up...but that may just be my interpretation of this!

To be honest, I am just relieved that I can take a break from the constant tests and Dr Appointments for a while....and that my diagnosis has not be removed which will enable me to possibly ask to be reassessed if any new tests become available etc. In the meantime, I am changing my diet to the recommended "clean" diet and I also had my coil removed yesterday in the hope that this may help to ease my symptoms. I am also looking into alternative medicine and after giving the diet/hormonal changes enough time to be able to assess their effects, I will definitely look down this route......lets face it - the Eastern World have used these methods for centuries and Western "Modern" medicine isn't exactly fool proof....certainly not for me anyway!! lol!!!

I just want to thank you all once again for all of your replies to my last post .....I feel very fortunate to have found you all....and don't feel such a fraud staying with the forum now that my diagnosis hasn't been removed!

Thanks again everyone
Eve.x
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"Thanks for this!" says:
AnnieB3 (05-21-2014), rach73 (05-22-2014)
 


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