Thank you for welcoming me. The knots I get are mostly in my neck and back. For the last 8 years it's been blamed on a herniated disk, but nothing has helped it and several surgeons couldn't figure out what was bad enough to be causing so much pain. My doctor gave me this diagnosis yesterday and I googled it as soon as I got home. It fits perfectly. Though obviously I'm not thrilled to have this, it's really nice to have a name to put to everything I've been going through since I was 18 years old.
Back in November I woke up one day, got out of bed and fell right to the floor. I wasn't dizzy, my legs just didn't seem to work anymore. After an entire day of this it occurred to me to go to the ER. For the next 18 hours or so I was down in the ER and my entire body was twitching to the point where it looked like I was seizing. I was totally conscious, just scared out of my mind and no one seemed to be taking it seriously. Finally I was moved to neuro and stayed there for 4 days but they never figured out what was wrong. The twitching (and horrible tremor) slowly reduced in frequency, I could walk again and eventually they sent me home. I was still experiencing the twitching but much less often.
A few weeks later I experienced the same thing with the twitching/conscious convulsions and was hospitalized again for 5 days. This time however I was completely incoherent for the first 2 days and remember none of it (fortunately I happened to be visiting my parents for thanksgiving at the time so they were there to get me to the hospital and stay with me). At the hospital they reduced my lamictal but otherwise couldn't figure out what was wrong.
I had another period of incoherence without the muscle spasms twice over the next two weeks. The incoherence may have been a strange reaction to oral morphine that I was prescribed for pain (i've always been fine on other narcotics however). I had taken significant doses of it each time prior to the incoherent episodes. I stopped taking it and I never had another episode. This still doesn't explain the twitching however. If you're still reading this thank you! Does any of these symptoms seem in any way related to Fibro/MPS? I have thousands and thousands of dollars in hospital bills (I'm uninsured) and no explanation for any of this.
Also Marlee, I never understood why deep massages (that feel so good at the time) end up making me feel worse in the long run. Thank you for the explanation.
Post Edited (Scarlett Dirt) : 1/24/2009 3:13:20 PM (GMT-7)