Thanks for your reactions.

I am puzzled why the neurologist says this. He is one of the few neurologists in my (small) country who specializes in Myasthenia’s. I have been to another neurologist. But he says he doesn’t know as much about these type of diseases as the first one, so he accepts his judgement without a doubt. And refuses to do any more tests.

Problem is I was suspected of having mitochondrial disease for a long time, the suspicion was quit strong since I do have other proven diseases that come with mitochondrial disease. Mitochondrial disease has never been proven in any test though. Mitochondrial disease also has a pattern of muscle fatigue with exertion an improvement with rest. I have always had my doubts about the mitochondrial disease though, something wasn’t fitting there. Last year I had an maximum exercise test with a cardiologist and to my surprise it was perfect. Someone with mitochondrial disease affecting their muscle could never do a perfect exercise test at one time an have serious trouble walking another time, I have fluctuating trouble most of the time, but this was a lucky coincidence, I don’t think I have experienced such a good day since.

I thought that every neurologist would immediately realize that I couln’t have mitochondrial disease, but I have seen 3 (!) doctors (of whom two are neurologist) since then, all saying I should accept that I probably have mitochondrial disease. They all say people with myasthenia do not have pain, which I do. They also think I should have more trouble with my facial an throat muscle.

At my last appointment the mg neurologist finally admitted that I couldn’t have mitochondrial disease. (after I tried to get him to read a scientific article about exercise testing in metabolic myopathys for months).But instead of rethinking my symptoms he suggested the psychologist.

The mg specialist also tested for LEMS after I almost begged him, but those test were negative. I do have constipation, dry eyes, dry mouth and orthostatic hypotension. Those symptoms vary at the same time as the rest of my symptoms. He says his tests are 100% reliable.

It is really strange for me hearing him talking about going to a psychologist. Only a few months ago some other doctor wanted me to go to a psychologist to learn to except the diagnose of mitochondrial disease (at that time I already had the exercise test, so I knew that couldn’t be the right diagnoses). And before I got the ‘suspected mitochondrial disease’ diagnosis I was supposed to be someone denying her depressive symptoms, which in turn lead to the physical symptoms.

I did manage to get mestinon at some point and it does something, but not what should be expected. I mainly helps with symptoms that didn’t really bother me in the first place, like the ptosis (which is usually mild)

Sigh.