Hi there. Im getting ready to stare down a dirty EMG
I posted what I thought was my parting "swansong" of "I have Lyme and reactivated Epstein Barr" and thats the reason for my twitching, blah blah blah, a year ago. My story was like all of you- started twitching full body out of the blue Christmas 2013, had 2 full EMGS an tongue EMG both negative, both within the first six months of twitching. Then was told I had virus and Lyme and moved on from (A**) as the cause of my symptoms.
However, I have taken a GIANT nerve setback in the last three months which is making me reevaluate this whole shebang. All of a sudden my calf started bothering me and I have very noticeable atrophy. The neuromuscular specialist was actually alarmed. It measures 3 inches smaller than the other. I feel like a zombie is knawing at it with pain, burning, pulling, tingling. It feels like its in the bone. My other calf is now joining in on the party. And Im still twitching. I also have a ton of autonomic symptoms and just had testing today. I also have some central nervous system symptoms. What could inflame all three of my nervous systems? Not convinced its the lyme b/c its now looking like that was in my past and I just have antibodies to it.
I know the differential diagnosis is large and its probably some sort of peripheral neuropathy, but in regards to *** is it still in the differential???? The dr testing my leg strength and said Im strong but a tad weaker on the atrophy side. Can still go up and down on the atrophied calf and even run on it for a little. Can walk on my heels, toes, etc.
How is it possible to have 2 clean EMGs and now this total fall apart! I hate how neuro things have to "develop." I guess my question is almost two years later I have atrophy but no real weakness, and still twitching all over - is it likely to be ALS? And the calf that is atrophying doesn't even twitch as much as the rest of my body! It rarely twitches.
I have had a million blood tests. The only weird thing is an IgM that keeps showing up as high and a low C4 complement and Antinuclear antibody. That shows SOMETHING immune is causing this nerve problem but yet I have no autoimmune disease. Maybe this is some immune mediated neuropathy.
I can't believe that I still can't check this off the box.
I know you can't tell me its just BFS, but is it likely to be ALS? In my case the twitching came a full 18 months before the atrophy and Ive had 2 clear prior EMGs (post twitching). Im afraid to get this EMG next week..... Help, any words of encouragement!