Re: Schwannomatosis, Neurofibromatosis type 2?

dizit wrote:

I've been looking for a definitive diagnosis for almost 10 years. I
have bilateral tumors on the nerve roots, sheathes, and peripheral
nerve bundles at every level of my spinal column. I do not have
acoustic neuromas, which would make NF2 likely but with the absence
makes the possibility almost nonexistant.
Pain is the major symptom. I've been on either morphine or oxycontin
for most of the ten years. They are somewhat effective.
I also have severe sleep apnea, both central and obstructive. I use a
BiPAP with additional oxygen piped in at 2.6 liters a minute.
Anybody got a clue?
I'm seeing Neurologists, ENTs, sleep disorder specialists.

What do you need a diagnosis for? ( it's being treated)
J

.

Relevant Pages

  • Re: Schwannomatosis, Neurofibromatosis type 2?
    ... have bilateral tumors on the nerve roots, sheathes, and peripheral ... acoustic neuromas, which would make NF2 likely but with the absence ... I also have severe sleep apnea, ... I think that your disease could be schwannomatosis! ...
    (sci.med)
  • Re: Schwannomatosis, Neurofibromatosis type 2?
    ... have bilateral tumors on the nerve roots, sheathes, and peripheral ... nerve bundles at every level of my spinal column. ... acoustic neuromas, which would make NF2 likely but with the absence ... I also have severe sleep apnea, ...
    (sci.med)
  • Schwannomatosis, Neurofibromatosis type 2?
    ... have bilateral tumors on the nerve roots, sheathes, and peripheral ... nerve bundles at every level of my spinal column. ... I also have severe sleep apnea, ...
    (sci.med)