Dear Jim:
Who did you see at Jefferson? I can't believe that they didn't do any
followup MRIs on you. I would get another opinion.
I saw the neurosurgeon at University of Pennsylvania Hospital (HUP) and he
felt a biopsy was unnecessary (thank god). He did, however, feel that I
still had a lot of inflammation and swelling on the spinal cord.
I will be seeing a new neurologist (at the suggestion of my present one) for
another opinion and medical followup. This will take place on Monday. I
have profound weakness in my quadriceps and knees. I have a constant aching
at the level of my inflammation in my neck. My hands have regained most of
the movement but still lack a lot of sensation.
I find the biggest problem I have is what I call "spine attacks". It starts
with any type of stimulation of the cord such as when I first wake up in the
morning, or after physical therapy. A weak, vibrating, prickly sensation
starts spreading down my arms to my hands. I lose all control over my arms
to weakness. It intensifies over a period of 5-10 minutes. The sensation
is unbearable. The doctors are at a loss to explain it except that it could
be part of my healing process (it's been happening for a month already).
I agree that the doctors are in the dark about this. Probably because there
is no one common factor to link the occurrences. I am a registered nurse
who specializes in IV therapy. I was all over the hospital in every room
exposed to who knows what. There is wide concensus that this is caused by a
post viral syndrome or a very active immune system that turns on itself
(autoimmune), sort of like a lupus-type reaction.
Thank you for your e-mail and keep in touch. If I find anything out that
sounds interesting on Monday, I will share it with you.
Have a happy
Karen