I have had symptoms since birth (orphanage til 6mo). It hit very hard when I was 25. I come up neg in the blood tests, so I was told it was psychogenic/conversion. Once that is in your records...............
I would try about every 3-5 yrs to dare get help. Finally I demanded to be diagnosed psychogenic/conversion by a real psychiatrist. The psychiatrist was impressed with the work I have done (massive counselling) , diagnosed no Psy/conv and was so concerned with my symptoms referred me to Wa Univ Med center. They also ruled out mental, leaned toward MG but no diagnoses was given.
I went back to a neurologist who had worked with me years back (he had temp quit his practice for health reasons). He had given me the nerve muscle cond test which was positive. That is the only criteria I meet besides many symptoms. He diagnosed me CMG. I had not realized there were different, forms?, I have no idea. The mestinon did not do anything. He said he felt mine was not treatable and said we would treat the symptoms as we go. He sent in therapists. I am amazed at how many things I had not realized were symptoms! Even chewing! Oh, I would get in so much trouble as a kid with the not being able to chew! Oh my.
My neurologist sadly has quit his practice again so I will have to go back to the Wa Univ Med. I will ask more. I had not asked my Dr anything, to be honest. My daught and I did not even breathe til we were out of the office and were in shock I was given any diagnoses!
There is, of course alot more to it all, but that is the 'short' reason it took so long. It affects all my muscles. The psychiatrist gave me my dignity back. I really appreciat her and will share some of her advice some time.