....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

Just keep in mind that a lot of us started out negative. I am now positive for 4 antibodies.
Mike

Positive for 4 antibodies... now that is being greedy...

I just got my negative for antibodies. On the plus side I was also negative for Lymes, Graves, Magnesium deficiency, etc etc.

I will be more than happy to give you some of mine. This is really a strange disease!!!
Mike

The silly thing is that 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 now) 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!!

As you said - it is a strange disease!!

Hey, Eve. I'm so glad that they didn't discount the clinical presentation and response to Mestinon. What a relief that must be for you!

It's not so much medical guidelines that keep them from doing more drugs, but legal ones—as in "I don't want to be sued."

The lab range is an issue that I'm too worn out to get into, but you raise a very good point.

Yeah, Mike, can you share those ABs with the seronegs?!

Eve, I totally get what you mean by being grateful for not having to doctor anymore. I would even suggest that you focus completely on something useful or helping someone else. Get that bad doctoring feeling the heck out of your body.

But since they won't try more treatments, that means you really have to manage MG with Mestinon and rest (and common sense). It's possible to do, but it doesn't always work.


Annie

Rest and more rest!!! Listen to your mind, if it says you are tired believe it. It takes a long time to adjust to this disease. Took me 3 years and I'm still learning.
Mike

More a case of listening to your body. My mind says I can go the store (500m) and get the shopping... my body says "ha just you try it! Don't think I'm going that far and back!"