Monday, June 14, 2010

things I can no longer do with ease:

-walk down or up hill
-walk for more than a block or so
-stand for more than a few minutes
-play guitar
-open jars
-grasp things without dropping them
-bend to pick things up


I could go on but this is making me depressed. I guess I am just trying to re-assure myself that I am not crazy and there is actually something wrong with me, considering I am under 30, in constant pain, which is helped somewhat by prescription, although certainly not on bad days. I'm getting weaker all the time, and need another prescription to control intense muscle twitches that make it impossible to sleep without pills.

I got a call from the Ottawa Rehab Clinic today. They previously said they would see me based on my symptoms, without a diagnosis, as long as my doctor wrote a referral. I am getting less and less confident in my doctor. It sounds like all she wrote down for them was that I have weakness in my lower extremities. They couldn't do anything with that. Well duh. I wonder why she didn't include any of my other symptoms, or any of the possible diagnoses we are looking at.

She previously referred me to a quack neurologist who was convinced upon looking at me that I did not have a neurological disorder, ran a nerve conduction test, but would not run an EMG on me, because according to him EMGs are only for detecting nerve and/or muscle loss in "older" people with no symptoms, and because of the severity of my symptoms, I must have something else, not Charcot Marie Tooth, maybe arthritis or Fibromyalgia, or maybe I just need "more exercise". ...!!! Bullshit!!!

CMT type 2 runs in my family and it can be detected through EMG, but doesn't show on nerve conduction tests. I found this information within many peer-reviewed medical journals, and it is also even on wikipedia. If I have CMT it would be type 2 since it's in my family, not 1.... ARG.

Next week I am going to paid physio, where I am hoping they will not give me exercises that will make things worse, instead of an OHIP covered clinic which commonly treats people with problems like mine. I have an appointment with a CMT specialist in 6 months. They say they will do an EMG. It is taking so long because it is now considered a "second opinion". Balls.

1 comment:

  1. Balls indeed.
    Do you know which doc you're seeing at the Rehab Centre?