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Old 05-28-2010, 04:06 PM
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alice md alice md is offline
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Quote:
Originally Posted by Stellatum View Post
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
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DesertFlower (05-29-2010)