Quote:
Originally Posted by Geode
I am trying to compile anecdotal evidence to present to my neurologist to support my requests to do further investigation for a few different diagnoses.
For myasthenia gravis, I want to ask for a Tensilon test, even though I'm seronegative and EMG was negative. suev, I found a great, concise post of yours about Mestinon helping you even though you are seronegative and your EMGs were not conclusive. Is it okay if I print it and take it to my appointment?
Also, can anyone else share your story for me to use, or point me in the direction of any similar stories about EMG's being normal? I was sure I'd seen at least one or two others, but am having trouble locating them. Maybe I'm search impaired 
Thanks,
Tatia |
You have more than anecdotal evidence.
There is very limited data regarding the utility of the SFEMG in AchR ab. negative patients.
The data which is available, suggests that patients who are seronegative are more likely to have a normal SFEMG.
http://www.springerlink.com/content/w916713q36h18333/
In fact there is more and more evidence that AchR MG , MuSK/ seronegative MG are not exactly the same disease and are caused by different mechanisms.
There is more and more direct and in-direct evidence that abnormal coupling of the electric signal with muscle contraction is of importance in the pathophysiology of myasthenia.
http://www.ncbi.nlm.nih.gov/pubmed/22386321
And possibly may be the only important mechanism in some patients leading to normal electrical signal (as seen by the EMG) in the face of abnormal repetitive muscle contraction.
There are tests which can test muscle fatiguability (and not muscle exitability), but for some reason those are not widely used.
In fact the diagnosis of MG was initially done by such a test, called the Jolly test. The idea that myasthenia has to be due to abnormal transmission of the electrical signal at the NMJ was never proven by any acceptable evidence based research.
you can read about it here (page 5-6).
http://www.mga-charity.org/informati...inter-mga-news
A tensilon test may not provide the answer either, as it can be negative in MuSK MG.
Last but not least, I am sorry that you have to go through this.
But, hopefully your determination will help pave the road for others.
Hope this helps,
Alice