Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
....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 anytime. He did mention 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 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 and you messages and hugs.....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
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 anytime. He did mention 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 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 and you messages and hugs.....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
are in the same boat. We are not crazy, just 'special' (I mean that in a good way) and need to take every avenue possible to get better. I am confident that western medicine will figure us out, but in the meantime I have also had to tweak my diet, yet again, but not going to give up. Glad you aren't either. Deb
Hang in there and let is know how the change in eating habits work for you. I have read that many see an improvement in their symptoms.
Hugs
-sherry
Yes, Deb, we are very much in the same boat...I was just reading your post!!!! I like "Special", we must be the rarest of the rare....I often think I should start doing the lottery with odds like that! lol!! As you said - I too believe, in time, there will be an answer for us....but right now it is not there yet! Fingers crossed we get there soon!!
Hang in there , and most importantly don't give up .. thats why we are all here..Cj
If you have the symptoms you most definitely belong in this community!Your input is valued and those here have experience to share that can be helpful. I just wish more neurologists felt comfortable trying some other treatments to see if they help like cellcept.
I am in the same proverbial boat with you and Deb.
No diagnoses but firm instructions never to go off my pyridostigmine.
Still waiting on some of my test results.
Hugs, Marie
I actually have the AcHR antibodies but it is around half of the reference range (0.12) and considered negative which puzzles me as it seems such a contradiction - they say titre levels do not corrorolate to severity of disease.....and yet there is an acceptable level allowed in the bloodstream?? So, I have a consistent level of antibodies for over 10years and all the symptoms associated, and yet, I am considered negative! Hopefully thoughts will change on these guidelines - as I said, it seems slightly contradictory, but I am no doctor!!
Thanks again everyone for your support :) I really appreciate it!x