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Old 02-10-2011, 12:52 AM
EDELSTEP EDELSTEP is offline
Junior Member
 
Join Date: Dec 2010
Posts: 9
10 yr Member
EDELSTEP EDELSTEP is offline
Junior Member
 
Join Date: Dec 2010
Posts: 9
10 yr Member
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Quote:
Originally Posted by Joebuddy View Post
My symptoms started 3 years ago. I had numbness in my feet and big toes. I went to my family Dr who referred me to a neuroligst. He did a nerve conductance test that showed neuropathy in both legs & both arms. He ordered a spinal MRI (normal) and blood tests (normal). He said since my general heath is good at 65, no treatment and call him if symptoms worsened.
I was not satisfied with his assesment. Since I live near Johns Hopkins Hosp., rated best hospital in US for Neurology, I scheduled an appointment. The doctor was much more thorough in his exam and the nerve conductance test was much more envolved. He also did the blood test that showed the elevated level of Igm protein and explained the condition on anti-mag neuropathy. He reccomended that I see a hemotoligist for further testing. I
saw an excellent Dr at Mercy Hosp in Baltimore who put me through a skeletal survey, and a bone marrow biopsy. Both normal, no luchyemia. He suggested that I try the Rutxin infusions. I had a 4 week cycle of infusions, twice in 3 months. There were very little side effects.....a few chills, drowsy from the Benydril. It all goes away after the infusion. There was no improvement from the 8 infusions. I saw another Neurologist at Hopkins. He has been there 17 years and has traveled the world with Drs about this condition. I would imagine that he is a leading authority on this disease. My feet are getting worse, I see him again in June.
What has happened with your Neuropathy since June? Are you still taking Retuxin infusions or anything new. I was just dx. Went to Hematologist and Rheumatologist, Neurologist. All feel strongly I should start infusions. Where are you in your therapy and condition?
Sincerely ,,,,Edlestep
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