movement disorder and seizures after immune system suppressed

[P_Joy]

My adult daughter some years ago began having severe fatigue, occasional writhing of right arm when resting.  PET scan of brain showed severe hypoperfusion: the radiologist said it looked like a senior with dementia... Lumbar puncture showed nothing.  A doctor recently gave her an immuno-suppressing drug for ET and it dropped her WBCs to critical levels, seizures began (seem to be complex partial type), her insomnia is worse and her brain feels "tight".  She has a history of dysautonomia and it is worse now.  Any thoughts, and I want her to go to a MAJOR medical center for neurology... perhaps Johns Hopkins.  

[Paxiled]

Your choice to find better docs is the right one.  When your docs aren't doing the job, find better ones.  You don't describe what drug she was given, but a short Google search shows there are 3 drugs used for ET and only one is immunosuppressant, so there might be alternatives.  Obviously, if she's having such a bad reaction to the med (interferon?) you should immediately tell the doc who prescribed it and as if it should be lowered in dosage or another med should be tried instead.  You also would want a 2d opinion to make sure she has that disease.  There are so many things that might have caused the initial problem, it's impossible to really have a useful opinion.  Could have been some hard to find infection or virus, could have been exposure to some toxic chemical she had a catastrophic response to such as mold, sick building, or pollutants in her water as examples.  I think Johns Hopkins or Mayo or other university major university hospital that has top specialists is a very good idea.

[P_Joy]

Thank you.  She was given Jakafi, which we discovered should only be given for an advanced form of ET with myelofibrosis.  RISKY, and the doctor did not disclose the risks to my daughter.  We suspect a chronic, sub-acute CNS infection; cannot get a local neurologist to do lumbar puncture to confirm...