Living with a negative SFEMG
 

I got up at 3 a.m. wore some wool clothing and became slightly overheated. That was enough to give problems lifting my arms, climbing stairs and even some ptosis in one eye which I never normally have.

There were two neuros doing the SFEMG in 3 different areas on the frontalis muscle which took 45 minutes. Ironically I was coughing spit out of my lungs for most of the testing…..nevertheless lots of perfectly spaced identical signals behaving nicely on the first electrode test, some odd looking ones on the second, and then 15 pairs of happy little jitterless signals with no discrepancies whatsoever on the third test - the SFEMG. Getting electrocuted and needled actually seemed to excite the muscles to the point that they came alive rather than collapsing or´dying out´as with excess heat or´normal´repetitive use.

The neuros don´t do very many SFEMG´s at the hospital - but I did not feel I should immediately rush off and go and get another test done. I trusted they would do a good job. In fact I felt that the practitioner was more disappointed with the results not showing positive than I was. I was asked to come back in the morning for more EMG´s & another RNS of deltoid muscles (a total of 5 tests) – am not totally sure why (something about checking for other things) But I was always under the impression that, even if not always dependable, the SFEMG would have the last word over all the other available tests when it came to myasthenic weakness.

For once somebody wanted to read all my notes, seemed surprised I didn´t already have a neurologist on the case, asked some great questions and wanted to hear the whole symptom history right from the beginning. Was even interested to hear about the atypical myasthenia examples and unusual SFEMG results on this forum.

I now know where I can find a good doctor and a good neurologist – that at least is a good new feeling.


Anacrusis

I am so glad for you. :)

I hope things soon improve for you.

Went back to the neurophysiologist today who received more info from me about patterns of myasthenic weakness and effectivity & reliability of SFEMG´s! (thanks Alice and everyone)

They do between 1-2 SFEMG´s a month at the hospital (which is more than I expected) and it actually serves half a million people….
So.....the really precious information which I have obtained from this forum is reaching increasingly newer destinations :)

Thanks so much

Anacrusis

PS….Surprisingly she was also interested in my slightly myasthenic hand writing sample which I enclose in this post if it attaches!

Did they do another sfemg today? Results?

By the way I appreciate the handwriting sample...it is interesting. I have noticed deterioration in my handwriting but not nearly so quickly. Was that done with or without being on mestinon?

My handwriting has always looked a lot like that, at least in my adult life. Interesting.

Thanks to MG, my nice and neat handwriting finally looks like the normal ineligible physician's hand-writing.

Thanks to a keyboard you share your research and ideas so legibly! :Clever:

I remember writing a 5 hour exam :Writting: in a room with over 90 degrees and no airconditioning and the pen kept slipping out of my hand - but in those days it still looked just like calligraphy!

The writing:

Attached below is my handwriting after 20 minutes with just a small 20 mg dose of Mestinon.....

Here is also an example after cooling with ice (sample no.4).......

http://neurotalk.psychcentral.com/thread170193.html

Would be nice to see someone else´s - I did find one sample of writer´s cramp and thought that might be it - then a You Tube video revealed it DEFINITELY wasn´t it!

I have also done some experiments with Mestinon and eye muscles which even my optician was interested in! :cool:


The SFEMG:

My gut feeling about the one SFEMG test I had was really good. I overheard talking about some instability with the actual test but I am quite sure I would not get a different result if they were to redo it the next day. Experience from other areas in life gives me the impression that if I were to take it again and get a positive result, my chances would be increased by changing the following 3 factors: 1) timing 2) practitioner 3) equipment
It would have been cheaper for them to observe my very rapidly fatigable myasthenic arms and legs that day! Anyhow it doesn´t make sense that Mestinon which improves neuromuscular transmission has been effective whereas the neurophysiological test for neuromuscular transmission has not!!!


In case anyone is reading this thread in the future and needs more info about negative SFEMG´s

See here:

http://www.mga-charity.org/forum/pre...could-it-be-mg

(A huge thanks to those people in that thread on every negative SFEMG´ers behalf!)

And some extra bits here:
http://www.springerlink.com/content/w916713q36h18333/

http://www.ncbi.nlm.nih.gov/pubmed/22386321

http://www.mga-charity.org/informati...inter-mga-news

Dealing with a negative SFEMG
 

“ Well no one in your family has it, so why would you have it? ”

“ Oh that´s great news – it means we can cycle around Europe next year ”

“ Of course it must be mostly psychological, can´t you see that yourself? "

“ It wasn´t fair of them to give you a suspected MG diagnosis like that, they should have waited til you got your test results back. Well at least now you know that you don´t have it – shame on them! "

(Deep down most people just want me to be healthy and are about as ´prepared´ to deal with someone else´s fluctuating symptoms as those who have them)


I received a letter a few hours ago from the neurophysiologist who performed all the tests, stating that despite those negative tests she thought it wise to personally refer me directly to a neurologist with expertise of myasthenia gravis in the same hospital. That is some practitioner! Finally after so any years without a neuro and all alone with my symptoms another small breakthrough but for me a BIG triumph!

Since receiving the negative SFEMG I noticed that I immediately had to adjust my strategies on how to approach medical professionals. If anyone ever reading this wants to discuss this issue then please feel free to send a private message. I´m no expert but am learning quite quickly from my experiences.