Would appreciate feedback on following ten questions from a new member (woman, 59):
1) Dilemma of flu vaccination. I have had it for six years but since the onset of TM two years ago, one neurologist decided not to give it. I read it might cause neurological damage or paralysis and wonder if my previous shots harmed me, and if I should take the shot this season. 2) My case started in January 2005, gradually, and took eight months to diagnose, might be better now if physio started immediately when I still could stand and use walker. Now in wheelchair, unable to stand, despite six months of physio. Is there any hope? One neurologist said there is no hope whatsoever that I would ever improve or walk. 3) Pain. Neurontin did not help and caused swelling of feet, gradual withdrawal was horrible, still ongoing, on advice of a doctor and pharmacist. Using Dilaudid (hydromorphone) which works but it is a heavy narcotic. Still, in pain most of the time. Should I just bear it and hope to learn pain management without drugs? Stress is a big trigger. 4) Montreal General Hospital Pain Clinic prescribed also Nortriptyline for pain (low dose) but I read about side effrects and have not had courage to even start. Anyone using it? 5) I have numbness of fingers and hands; several doctore speculate it is possibly pinched nerve (at elbows) but it has been now almost three months. I am due for next MRI end of November to see if lesion has grown bigger. 6) My left arm is very painful, could it be a carpal tunnel syndrome from wheeling my chair? 7) I have tried hypnosis, meditation, osteopathy, Chi Gong, and still do. Would acupuncture help? 8) This all started with intense itching for 3 months, anyone else had that? Itching stopped when this disease started with dropfoot and progressed from there. Also, I had breast cancer with chemo and radiation six years ago; could it have harmed my immune system for virus to attack? 9) I had bad gastro (vomiting and diarrhea) just before onset , then another episode a year later which deteriorated my case. Anyone else? 10) Debilitating pain, despair, discouragement, with no sign of improvement... How to go on, afraid to hope and afraid not to hope? My entire life is now consumed with TM, exhausted mentally and physically. Words of hope? Doctors throw up their hands and admit they have nothing to help me anymore. They have tried steroids and IVIG transfusions and I now question if I should consent for more of the same since I have contradictory opinions from neurologists? Thanks from Leila
