Hi everyone

I just want to say a big thank you to you all and it looks very much like goodbye from me. Waiting for the SFEMG has been difficult as I was dreading a negative result and the removal of my diagnosis....and it looks very much like that is the way things are going to go...

As some of you know my Neuro had been certain of my diagnosis despite negative AChR and MuSK and an "unremarkable" NCS/EMG. Mestinon was a Godsend for 3/4 months and secured my "Clinical Diagnosis" but then a trip away with my daughters turned everything on its head and the Mestinon "Magic" waned. After upping my Mestinon dose my Neuro had assured me (and my Father) that my diagnosis was solid and that a negative SFEMG would not change my diagnosis/treatment. I then hit a bad exasperation (maybe a virus) and a letter to my GP seemed to indicate a less certain diagnosis and a complete backtrack on all of the assurances he had given me. My Father was sure the letter was just my Neuro covering himself as he also felt that at every appointment my Neuro had been very positive and assured of the diagnosis, he had indicated that negative tests are possible and that to proceed to steroids would need me to accept the risks in light of the fact that we had no evidence to back up the Clinical Diagnosis....I, on the other hand, was not so convinced!

So....I arrived for my SFEMG yesterday under the impression I was also having an appointment with my Neuro, unfortunately this was not the case. We were called into the room for the test and my Neuro came in to say that he was leaving for the day and he would review the results and be in touch. I felt bad that the Dr doing the test was stood waiting to start the test but I asked my Neuro if there was any validation of my symptoms in the consistent low levels of AChR antibody levels in my blood (My reading 10 years ago was 0.27 and last year was 0.12) he dismissed them and said that both were negative and though there is much debate on this there is an acceptable level allowed in the bloodstream hence the reference range. I then asked where I stand if the result is negative and he said this was the end of the road - my face was evidently drooping and if a SFEMG into a weak muscle was negative then there is nothing to find....which I do understand and accept but I felt a little mislead by previous discussions. I also understand, and to a degree, I am relieved that he would not trial steroids without any evidence to back up the diagnosis due to their risks but the fact that this now seems to put my diagnosis onto shaky ground is upsetting after everything it took to get one in the first place. He said that I can keep Mestinon as it does still help a little...but whether he will change his mind on that remains to be seen. I asked what options I had available to me and he said my best option would be Plastic Surgery (?!?!?) My Dad then asked what about the fatigue elements and he said that if I was his family member he would recommend an ME centre for a graded exercise program...but seemed reluctant about the ME part saying "for want of a better way to say it"?! Who knows!! In his defence he said that Dr doing the test was very good but that it would be his decision as to whether the result was positive or negative not the Dr doing it and so, in my Neuro's defence, I felt that he was saying that if there was anything that would back up the diagnosis he would accept it and not necessarily stick to the test guidelines of what is positive/negative?? But that may just be my interpretation!!

The test itself was ok, some parts were painful but manly it was just uncomfortable, I felt the Dr doing it was much better than the one who did my EMG - he tested along my right eyebrow and above it for an hour. I have to say that I felt he was really thorough and if nothing showed then I don't think I could dispute what he did (not that I know what I am looking for!!) I was listening to the strange noises from the machine trying to work out if the noisy or more silent readings were more significant....or neither and it all meant nothing! At the end he asked if I'd had botox, I said "no" but asked why and he said it can produce the same abnormalities MG and he'd had a patient the week before who had so he thought he would ask? I had to look upwards for all of it and felt very weak and shaky all over after - he noted that my eye had drooped more than it was before the test - which was expected I suppose! While my Neuro had been in the room before the test they had said that the Dr would need to analyse the result and I would not get the results there and then (and my Neuro also wanted the final say on it) but afterwards the Dr did say that they can usually tell straight away if it is "Dramatically Abnormal" and mine was not, but he needed to have a closer look and do the calculations. I fear he was trying to gently prepare me for a negative result...though my Dad thinks he must have found something due to the botox question! Who knows?!

I have to say....I really feel like this is it and this is the end of the road. It is safe to say that I will not be going down the Plastic Surgery route and I am somewhat relieved that it has not been suggested that this is all in my head as I don't think they recommend Plastic Surgery in those cases?! I may write a pleading letter to him to ask if he will allow me to have any new test that becomes available for MG due to the fact that he has been so convinced of the diagnosis and said there is nothing else it can possibly be!! But beyond that, it looks like I am dismissed and need to find a way to get on with it! The graded exercise is something I can do myself...though it makes no sense to me to be ME as I was very fit when I got ill exercising 3 times a week, working with 2 young daughters and leading an active life so its not like I had deconditioned into fatigue and activity/exercise intolerance?!

I wonder what my final Official diagnosis will be this time....I assume the Clinical MG will be removed and I will be left with no explanation to offer the people who wonder if I've had a stroke due to my facial droop! Who knows, maybe I am a mystery or maybe one day they will place all the pieces of the puzzle and I, like many I am sure, will finally have a confirmed diagnosis of some form/variant of MG. Until then, I will change my diet and maybe try some alternative therapies and try to do whatever I can to help myself.

I just want to say a HUGE thank you to each and every one of you, your posts have educated me and given me the strength to pursue things to this point and I am very grateful to you all for that. You are all such an inspiration and I will call in to see how you are all doing from time to time, but I fear this is no longer my place, I feel like a fraud and It doesn't feel right to contribute here without actually suffering from MG as you all are.

Thanks again
Eve.x