You have put a lot of thought into the topic and done a lot of research – perhaps a new piece for a publication somewhere down the line… Thanks for sharing all your interesting view points as well, wild_cat.

I know exactly what you mean about it being difficult to shake off an unsubstantiated psychosomatic diagnosis later down the line that has been assigned´willy-nilly´by a doctor who previously didn´t do his/her job properly and yet retains such lasting powers of influence over future assessments with new doctors.

The last thing I asked my then doc was to give me the test to prove to both of us that my weakness was actually of psychosomatic origin and where was that test and why hadn´t I taken it! It´s a bit of a mix of mind and matter in every disease granted. But the problem lies in the fact that assigning a disease purely to ones own´imagination´is a denial of resources available, treatment and in worst case scenario with MG, your life.

In my case part of me started to believe that yes, maybe the doc was right I had had a child, I was a little older, had a very demanding job, yes it must just all be getting too much for me! Things were developing so gradually until the worst peak where I was close to needing a wheelchair. I learned an awful lot about human nature during my 2 years there whilst the doctor learned very little or nothing about myasthenic symptoms.

But another part of me was gradually realizing that these were not symptoms for the psychiatric ward.........

There were things like what a happy and balanced person I was. If I had given up on activities and on life in general I would have understood, but instead my brain took over and if I could not finish speaking a sentence, finish a round of applause, peeling an apple, sharpening a pencil etc, at least I had every good and ambitious intention of starting it and I figured out the most ingenious adaptive ways to get things done.

Being close to drowning with gentle swimming when muscles suddenly quit...Why using the upper body and pushing myself to exercise was complete myasthenic torture where it could not even do what my 80 year old mother-in-law´s could!! Yet the lower body that was not so affected with myasthenic weakness felt like it belonged to a 25 year old.

I did get ALL the tests in the end (all after I started to gradually get better and had a little energy to fight for them)

I have had 3 regular doctors, the most recent was a good one but I am changing again because I was fortunate enough to meet another doctor who shows´interest´in a negative SFEMG and that makes a big difference.

In the space of 5 years I have very briefly met only TWO medical professionals related to MG who have really caught my attention with their approach in a big way and of course the people on this forum - unfortunately both of the profs were neurophysiologists.

Should it really be that difficult for a doctor to look at this:

´Specific sets of fluctuating muscle weakness that are exacerbated by heat & repetitive muscle use, improve with rest and cooling´

And think.....´Hmmmmmmm. Now why don´t we just go ahead and try to rule out MG weakness, and lets take a few tests before coming to any conclusions´......


Anacrusis