Dear Ally,

I haven't been writing on this forum for a long time, for many different reasons. but, I do surf here every now and then, and seeing your post made me feel that I just have to write back. (hope I won't regret it).

and yes, bad experiences with doctors can make it very hard for you to trust any physician again. I even had a hard time trusting a physician I know very well and see in the mirror on a daily basis.

fortunately, there were others- like her patients, colleagues and research associates that trusted her very much, so it helped me gradually reagain my trust in her as well.

and also one young and relatively inexperienced neurologist, who said- you know your illness best.

he may be much less experienced and knowledgable then all the world leading experts I have met, but understands me and my illness more then any of them ever did before.

as to your question regarding the antibodies. Angela Vincent recently gave a lecture (in the euromyasthenia conference) about the fact that in patients with a low titer of AchR abs. there are also MuSK antibodies that can be detected in a more sensitive assay. so, your clinical picture, and all the rest, could easily go with that.

as to the SFEMG. you already know my oppinion about the accuracy of this test. and forgive me for saying this, but saying that the muscles are too weak to test, goes against all the common and excepted understanding of this test. in fact, it should be done in the weakest muscle that you can find.

I have had positive and negative and equivocal tests, and I think none of them is worth the paper they are printed on. there is no doubt in my mind (based on many facts and evidence) that my illness (and probably that of others as well) is not due to abnormal trasmission of the electrical signal (which is what this test measures), but to a problem in the traslation of this signal into a normal muscle contraction.

I am not a neuromuscular expert, and do not know what is the illness you are concerned about, but I think it is not a good idea to be worried about something that you don't know yet. and in my oppinion it is still most likely that you do have myasthenia and with proper treatment can probably do very well. I too was given a myriad of diagnoses, include ALS, by physicians that didn't understand and just threw what they had in their head, without realizing the consequences of that.

I am glad that you have found a neurologist you can trust. and just let her figure it out. and then what ever it is, I am sure you will be able to face it.

it is always easier to fight a dragon when you are not blind folded and don't have to fight windmills at the same time.

I know it is a very hard time for you right now, but keep on fighting to get all the answers. call that doctor X. he is not god. he may have given his secratary the letter to type and she forgot. you never know. two months is an unreasonably long time. and there are really good physicians out there. not all are like the ones you have encountered. don't assume that he doesn't care.

you remind me of a marathon runner I once saw, who fell down on the 40th kilometer. he sat there and kept on saying- I am a failure, I am a failure. I encouraged him to get up and walk, leaning on his wife, to the finish line.

you now have to do the same. you are almost there. so don't give up on yourself now. don't fall into despair, after you have been fighting this nuinsance for such a long time. get as much help as you can, from whoever you can.

and we are all here to help.

best,

alice.