Thought I might send an update and ask a few questions.
So far, I've seen the neurosurgeon and he said right away, that there is no way what's going on in the c6-7 area is my prob.
So then my next trip was to see an ALS specialist, since a neuro nurse I know ran my symptoms and EMG info past two neuros and they both agreed I should see the ALS guy, they thought it was ALS. So I saw the guy, and I shouldn't post the words that came to mind after I left the office. Here are some of his findings:
Normal, non-pathological reflexes. Interesting since 4 other MD's have stated I have
4+ reflexes in all four ext. plus clonus.
The patient believes her forearms are atrophic. I observed no pathological atrophy.
Okay, people just randomly develop "holes" in the
forearms and other places? My physical therapist was
impressed with my atrophy, and he sees me all the
time and knows my usual muscle tone.
I just had to rant on those. I think he was pissy because my neuro nurse friend worked hard to get me seen pronto, otherwise my appt with the office was going to be Feb 5th. Here are some questions.........
And BTW, I see my real neuro on Jan 5th, so we'll get some of these questions addressed, I just want to see if anyone has any experience with these things:
** With whatever it is that's happening with me (not saying ALS, just whatever it is), when my weakness and then atrophy kicks in it tends to follow a pattern. The pattern is, I'll get cramping and twitching in the muscle mostly at night for 1-2 nights. Then I feel some weakness kick in, then I notice the atrophy. It always happens on the left side of the body first. So far the progression was the left forearm (inner) then right forearm (inner) then the triceps. Then the outer hips, left, then right, then inside the hips (like where you sit on a saddle) left, then right. Then hamstring area kicked in and finished, and now it's the calf muscles and tibialis anterior.
I'm trying to stretch everything several times per day since it's getting contractures.
Also see lots of small "dimples" at joints like my wrists,elbows, knees where the smaller support muscles are gone.
I know Wright might get on here and tell me to get a life and quit thinking so much, but this is what I do when I have to take a break from running the house, taking care of the kids, and still trying to do a little of what I used to do around the house. And reading books, and socializing. I'm the one who remodeled my whole house, chipped tile off half of the house floor and tiled the whole thing. Replaced sinks and faucets. Fixed a leaking wastewater PVC pipe. I have replaced almost every fan in my house. I've replaced lighting fixtures. I've built a fence out of 4x4's and boards for my garden. Tore out my master bath and hung backerboard by myself, fixed a broken toilet flange, had half of the walls tiled when I quit and couldn't do it anymore. I cut down trees, cut them up for firewood, and then split them by maul and sledgehammer after they check. I'm usually the one who gets up on the roof, cleans it, cleans the skylights, sprays for ants around them. I'm the one who gets in the attic twice per year to do a check for carpenter ants and terms, looks for leaks, checks the duct work, and the such. And I was doing all of this stuff right at the beginning of this year, 2010. Add to that working 3 12 hour shifts as a floor nurse. Even back in June of this year I tried to resume my walks and went 4.5 miles in 1.5 hrs (used to walk 9-10 miles in 2.5 hrs). Did it once, and the next time was when the spasticity and fatigue started in my legs.
So, I'm bored. I would love to use my sewing machine or pick up my cross stitch again, but my fine motor is not that good.
So, ALS or not, I'm just hoping I'll put this out there and someone will have some idea of what may be going on. I've been looking for other boards, but I've not had much luck. I found one for MDA, but it's not set up like this and not nearly as much info and users.
Thanks,
Michelle