Quote:
Originally Posted by alice md
I personally believe that there is a significant number of seronegative MG patients who are not diagnosed as MG (and therefore are not part of the statistics).
When you assume that a certain combination of tests virtually rules out a certain diagnosis (when in fact the sensitivity of those tests is unknown), there is no way you can know how many patients truly suffer from the given illness.
Possibly you are right that seronegative (as opposed to seropositive) are over-represented in internet forums, but at the same time those who are less proactive and told they are suffering from psychiatric problems, or other " waste-basket diagnoses" (when in fact they have MG) are under-represented.
It is very hard to know what is the true number of neglected MG patients.
I have been trying to find this out over the last few years, without much success.
The patients we are seeing on those forums may the proactive edge of a very large ice-berg. The neruology community is overall very narrow minded and easily dismisses patients with myasthenic symptoms who do not fit the book.
Some of those patients may eventually (years later) be diagnosed as suffering from myasthenia, and probably many are not.
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AliceMD do you ever sleep?
You are in better position than I to assess but my experience with neuro resident at UM hospital made me think it may be more of time or productivity demand issue than narrow minded, at least when they are first starting to practice. At intake in the hospital ER, i was quite impressed with how thorough resident was but once the actual neurologist (who I did think was narrow minded, dismissive and condescending) saw me she was not the same.
After the emg test she actually told me I should think it was great news that blood and emg were negative which clearly showed me she didn't get it at all!!
Hearing that I lost all confidence in her desire, ability to help me.
I have been fortunate enough to find a neurologist who is the chair at medical school and was thinking I might suggest i could volunteer to work on thesis/project with
Neuro students to address this type of issue. Any suggestions for study, project, thesis would be greatly appreciated.
Also I was accountant before lawyer and although my typing skills on iPad are not so great, I am great at compiling information into presentable reports. Perhaps we could do some sort of survey of neuro's to compile info the could be useful?