View Single Post
Old 12-06-2010, 10:30 PM
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
Default

Annie,
You are good. Your tone was fine. I wanted to be sure I was not somehow implicating my neuro, who I love.

We did not look for RCMAPs with my local neuro, not sure that he even thought to and I did not know about it until later. It is on my list of things to mention and watch for next week.. no question.

The SCC CMS makes some sense to me for mixed results- as I am clearing the mestinon, I am finding that almost all of my leg weakness is in my thighs and gluteous. Very little weakness in my lower legs. Thus, with mestinon, the lower legs would have been OD and show the decrement, whereas the arm/hand, which is impacted more, would have shown the lingering increment.

Yes, there are tons of other life symptoms, just not classed with this. In middle school and into high school I had unexplained hand weakness and forearm pain. It would flare and then go away. Sometime so bad that I was crying and had little and grip and would end up in the ER with our family orthopedic. No one could figure out what was wrong. They would give me naproxen or other anti inflammatory, and then after a week or so it would fade. As I hit adolescence I went through a huge clumsy period. Not just clumsy, break everything inthe house clumsy. Notable. Restless legs- runs in the family, when my mom has had some bad episodes, the Dr. actually told her to drink tonic water and it helped ( she no longer can because of other med conflicts). TMJ in grad school. Jaw muscles so tight that I could barely get a straw in. valium and PT to relax it and learn face/neck stretch/relaxing . Have always had "tight" muscles, and both of my girls ( especially the younger) have issues with tight or sore muscle and being woken by charlie horses.
Trust me, if I have RCMAPS, we will all get tested for CSS. My mom has already said she would do whatever testing needed. She has so much night pain that I now recognize as part of what I experience that I would love it if a daily fluoxetine would take away her need for pain patchs and give her part of her life back ;-)
I have had bladder urgency and constipation issues ( yep, constipation, even with about 400 mg of mestinon per day in me). Neither of which are MG related, but both of which are LEMS or CSS related.

The more I thnk about it, the more I can rationalize. Then again, it might all just be coincidence and rationalization. It is an interesting intellectual exercise up to a point, then after that I am just spinning off and losing my cool, because there will be no way to resolve it before next week.

On the point of traces, I have considered having my husband attempt to take pics of it with the cell phone. Not sure if they will let me, and not sure how the oscilloscope screen will come out in photo.
roguepuppet is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (12-08-2010)