18 months ago I developed a sudden, constant burning pain in the thumb and index finger of my left hand. The pain was absolutely unbearable with no relief at all from medications. Two months later I developed the same pain in my left hand but on the top of the hand and fingers.
Two months after that it started in my right hand and also caused damage to the motor nerves as well as the sensory. A month or so after that it attacked one of the other nerves in my right arm, At that point the doctors told me I had very severe damage to my radial and median nerves in both my arms.
I also have nerve damage in my legs and torso. My walking has been badly affected. Especially since my right foot is mostly numb. I now use a rollator to move around.
My neurologist doesn't know is causing this. He suspects that it is some sort of vasculitis, probably polyarteritis nodosa. They tried me on steroids but it was a disaster and we had to stop.
My EMGs and nerve conductions have all been abnormal. I am scheduled for muscle and nerve biopsies in January.
Does anyone have any advice for me ? Especially the doctors. My quality of life has really diminished. My symptoms are still progressing. I'm afraid of losing even more function than I have now.
One other thing that should be mentioned is that I have moderate mixed cerebral palsy. (spastic / ataxic). The neurologist says that the two conditions are unrelated, I'm not so sure.
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