Rach, Do you have the ACTUAL copies of all of your test results? If not, then you can't know for 100% certain that they were negative. Sorry, but been there, done that. Sometimes, doctors do not tell the whole truth and nothing but the truth.
I am really sorry you and your health are being kicked around. I can't remember, have you seen a neuro-ophthalmologist?
As far as the Tensilon Test goes, it doesn't matter how long the effect lasts!!! Tensilon last for only a few minutes. It's a very short-acting drug, which is why it is used for that test. It can be dangerous to use for longer and some people even have reactions in that brief amount of time. The only thing they should be looking for is IF it improved obvious weakness like ptosis or upper body weakness that they tested before, during and after the test.
I would guess that if it lasted an even shorter time than five minutes, that would indicate how BAD your MG is. Just like how some MGers can get by with Mestinon every four hours while some take it every two.
Is it the goal of these doctors to see how long you can suffer before they give in and help you? I think they've achieved that and then some.
The SFEMG being 98% positive in MG is BS that the neuros here have concocted. I've seen those studies elsewhere and they do not backup those statistics. And the SFEMG is highly dependent upon WHO is doing it. I would bet that if Dr. Howard or someone over here in the U.S. did it who has done it a lot, it would be positive.
Has anyone offered to do the Congenital Myasthenic Syndrome (CMS) blood tests? There are a couple of mutations very common to Northern Europe (Rapsyn for one). The tests are done by very few people. I believe Oxford is it in your area. France does them too, as does Germany.
Some of the people with CMS have too much acetylcholine while others - like in MG - have too little. They are not autoimmune diseases but genetic disorders causing those problems. My doctors aren't 100% sure if I have CMS, MG or both. Long story. Have you had symptoms since birth or only recently? Most of the CM syndromes are present since birth.
Did you ever contact Dr. Vincent? A very brief email with "please" and "thank you" would probably be more effective than too much info.
Maybe you should contact a news organization. Maybe these idiots would respond to public pressure!
I just hope you can get some solid answers. Again, get copies of ALL your test results if you don't have them already. Take it easy.
Annie
http://neuromuscular.wustl.edu/synmg.html