I don't post here often, but reading your post, I just had to add a few words.

you can have myasthenia with a normal SFEMG and no antibodies detected in the commonly used tests

let me say it again-

you can have myasthenia with a normal SFEMG and no antibodies detected in the commonly used tests


and as it is written in the "hunting of the snark" (written by Lewis Carrol)-

"Just the place for a Snark!" the Bellman cried,
As he landed his crew with care;
Supporting each man on the top of the tide
By a finger entwined in his hair.
"Just the place for a Snark! I have said it twice:
That alone should encourage the crew.
Just the place for a Snark! I have said it thrice:
What i tell you three times is true."

I will say it one more time-

you can have myasthenia with a normal SFEMG and no antibodies detected in the commonly used tests

and telling a patient that it is too costly to give them a treatment that has the potential to significantly improve their life, and possibly alter the course of their illness, which is already leading to some breathing and swallowing problems, is ..... (I better not say what I think or I will be blamed again by some people on this site).

and if something has four legs, barks and wags its tail, most likely it is a dog, even if is in a different color, shape or size, that what one usually sees.

there is no way for me to know if you have myasthenia or not, but no test in the world can exclude a sound clinical diagnosis. and from what you say, it is your neuroloigst that thinks that you have myasthenia based on your clinical picture.

alice

Alice,

Thank you so much. I really take what you say to heart.

Here's why they don't think I have MG: I report some of the typical symptoms, but they're all so mild as not to be discernible to the doctor. The symptom that is severe, and that the doctor can see, is the weakness in my side and back muscles. And that, they keep telling me, is not a MG symptom.

Thank you so much for your concern. I know that you know exactly what I'm going through here, and I feel better just knowing that.

Abby

I went back to Osserman's original paper for you-

trunk weakness (which is I believe what you describe) was the presenting symptom in 3.5% of 1200 patients he described. so, possibly your neurologist has not encountered such a patient yet, and therefore thinks it is not a myasthenic symptom. (what you have not seen, can't exist, right?)

the other symptoms you describe in your posts are mostly respiratory and bulbar and sound significant to me. but, those symptoms are very hard to assess on a routine neuorlogical exam, so are therefore pretty much ignored by most of the neuorlogists.

I have met only one neuroloigst who actually wanted to see how I drink a cup of water. she graded my swallowing difficulties as moderate to severe, but this was never addressed by any other neurologist, even though I had a weight loss of 15 kilograms, in the early days of my illness.

and only one neurologist (another one) who actually checked the strength (or rather weakness) of my jaw muscles, and could understand why I was having chewing and breathing difficulties. he explained to me that this is one of the strongest muscles and if he can so easily over come it, then there is significant weakness.

it also should not come as a surprise that a patient that has no detectable antibodies in the usual tests, and normal EMG studies, would also have a less typical clinical presentation. you don't have to be sherlock holmes or a world leading NM expert, to be able to understand that.

It is true though that most of them find this too complicated to understand. I recently summarized all the data I have gathered over those years, including the explanations I have given here, as to why you can have myasthenia with a normal SFEMG, with supporting evidence from the medical and scientific literature, and this was a response I got from a neuroloigst- "You have written an amazing article. I have to be honest and say that most of the physiology and pathophysiology is beyond me."

another world leading expert neuorlogist told me that my idea of testing the force generated by the muscle directly, instead of checking the electrical transmission (which was the original first objective test done in myasthenia by Friedrich Jolly) , would be non-specific. and would not differentiate between the fatigable weakness of myasthenia and that of COPD for instance. (as I sent him a paper that used such a technique in COPD patients). I do want to hope that a neurologist would be able to see if a patient has COPD or not, and overcome this obstacle, but apperently this is too much to ask for. (sorry for my sarcasm, can't avoid it sometimes), and guess its better laughing about it, then crying, thinking of the consequences of this kind of clincial thinking (or rather not thinking) .

hope any of this helps you in some way, or at least does no harm to you or others on this site.

best,

alice

Alice, I wish I could send you cupcakes or something. That gives me such a boost of hope to know that mg does sometimes present itself this way. With that knowledge, I can push for a diagnosis and treatment. Thanks so much.

Abby

I'm new here - still trying to get a firm diagnosis - but since you mentioned other AI conditions, I'm wondering if you have ever been tested for Celiac Disease? It's much more common than most people realize (1 out of 133 people have it; 97% of them don't know that they have it).

I'm not saying not to pursue MG testing/treatment; just look into the possibility of CD and/or gluten sensitivity (which will not show up on any blood test, but will respond to a GF diet).

It's frustrating to have symptoms, but no "positive" test results....

celiac disease, like myasthenia has a "known" presentation, and it is rarely considered in patients that have atypical symptoms.
but, in fact a signficant number of patients with untreated celiac will have unsual "out of the box" symptoms including obscure neurological symptoms, and even findings on MRI.

also, not all patients will have findings on commonly used tests.

I highly recomend the book by Jerome Groopman-"how doctors think", which describes in the first chapter, a patient with celiac which was diagnosed as anorexia and other psychiatric problems for more then 10 years (does that sound familiar?).

http://www.npr.org/templates/story/s...toryId=8946558

alice