Well, to make a long story short about 2 months ago,I started having burning in my arms and numbness that lasted about a week then it was gone.Then I had a severe tremor in my right hand that lasted about an hour. Two days later I woke up with what later I found was Myoclonic seisures and the tremor in the right hand was back this episode lasted about 5 hours after a trip to the ER and lots of drugs. I have now been having the jerks for a month and a half. The burning is gone but the numbness still comes and goes as well as the tremor. The myoclonus is sparatic sometimes lasting all day every couple of seconds, other days none at all. The Dr.'s have done MRI's, spinal taps and tons of labs. The only thing that was off was I had an elevated White blood count in my spinal cord. They have put me on requip, klonopin, and now lamictal for seisures. It is not like full blown seisures though, my whole torso jerks, muscles tighten then release. The dr told me that he hadn't seen myoclonus present like this since his residency 20-25 years ago. Big help! So, now they are sending my to the University in Denver to a movement disorder specialist. Whatever that is. At first they thought MS but know I have no clue what they think since my tests all seem normal.They said they know it is in my brain or spine. Anyone know or have experienced anything like this? Is a movement disorder specialist the best place to go??? Thanks tanda

Hi;
Have you ever been tested for Lymes disease? Very similar symptoms to a few people I know that have it. Problem is, most lab tests miss the diagnosis because it sometimes is hidden deeper in the tissues than in blood.
There is a good lab in Palo Alto CA called Igenex labs. They have the most accurate test around. Best docs too. Check it out. It may save your life!

Yes the dr told me that they tested for lyme and it was neg. although we live in a small town in Nebraska, not the best dr's around. Who knows about their labs.

just exactly what was MRIed? did they ever happen to do whats called an MRA on your brain?this would pick up on strictly the arterial structures of the brain and nothing else.its just a much clearer look at all of the arteries within the brain and would possibly detect any sort of vascular malformations.its just another test to try.also,did they use contrast when they did the MRIs?hopefully they DID MRI your c spine too?

i think the type of doc they are sending you to would be either a physical medicine doc or whats called a physiatrist,this is NOT a 'head doc" this type of specialist is the type of doc i had when i needed to go to rehab after my spinalcord surgery damaged my leg and my L hand,he helped alot in getting me to be able to walk again and get at least some usage out of my hand again.either one would be someone who could at least do a full evaluation on your symptoms.at this point this would be a good place to go.they may be able to figure out something that the other docs have been missing.its at least worth the consult and eval anyways.you do have some rather freaky symptoms,and it is definitely stemming from what you have been told,the brain or the spine.good luck with the new doc and please continue to keep us all posted,K?Marcia

Thanks for the info, I just wish they would figure something out. After two months I have decided that whatever it is I could cope but I want to know. They have done 5 MRI's head,neck, shoulder,and upper and lower spine. Nothing so far. No mra's though. I think that may be what the dr was talking about last time though. He said that he could do a more invasive study on the ventrical's??? He said they may also repeat the spinal tap. They doubled my dosage of lamictal to 100 mg a day and I am still having the jerks.

Thanks for the reply I will try to update when I know anything which doesn't look like anytime soon. I see the neuro again on Monday and they are scheduling for Denver.