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Originally Posted by dahlek
I checked out the references you've cited and found very little later than '92-'93? It could be that testing has changed, [most likely] a great deal since then and the 'definition' or diagnosis could have a different name, more specific now. I'm finding that the definitions are changing by the month, myself.
Are you at a point where you could see a new neuro with a newer set/fresher set of eyes and brains on your case? The second opinion route mite be a good way to get a new set of tests, to compare with your initial tests...
If you can get copies of your prior tests, using www.Lizajane.org and the spreadsheets there could be useful to help you 'map' out what has been tested, changed, and is, essentially going on with YOU. I hope this helps...- j |
The key word is "Fasciculation". That should yeild lots of citations. But, only Hudson et al 1978 (J. Neurology) have written specifically about the syndrome. I have seen 5 neurologists, 2 in the last year, and found them all to be of little use. Over the past 17 years, I have researched the topic extensively and concluded that the syndrome is idiopathic and shall stay that way. As described by Hudson et al, NCSs will be normal and EMGs will register the fasciculations which can be seen anyway. One neurolgists did selected blood test but they showed nothing. There are really no other tests, it's all based on signs and symptoms. Again, that is why I seek other MPFS patients. I am now seeing pain managment specialists only.