Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Degenerative Diseases Community
This patient support community is for discussions relating to living with degenerative disease.
Multifocal Motor Neuropathy
by Oldaugie, Oct 01, 2007 07:01AM
Not really a question but wanted to share my experience with others who might benefit. My issues started over two years ago with a progressive weakness in my left hand and wrist which has continued to date. see the following posting for more details.
http://www.medhelp.org/forums/neuro/messages/34499.html
http://www.medhelp.org/forums/neuro/messages/34531.html
After undergoingg nerve decompression surgery for PINS syndrome (which was ineffective and ultimately unnecessary) I was sent to an orthopedic specialist who , after testing believed I had a neurological disease (He thought ALS) He sent me to a neurologist who believed it was, at first, TOS - thoracic outlet syndrome - and sent me for 8 weeks of PT. When that didn't work, he referred to an orthopedic surgeon in Boston for another nerve decompression surgrys - this time between my shoulder and elbow.
http://www.medhelp.org/forums/neuro/messages/34799.html
That orthopedic surgen spent about 10 minutes with me and sent me to a neurologist with a sub specialty in neuromuscular diseases and autoimmune neuromuscular diseases. He identified it as probable MMN and then confirmed in after 2 hours of nerve conduction and EMG studies. Next week I get to talk to him about treatment
I'm really writing this to encourage anyone who has an undiagnosed condition to really press their doctors about why specific diseases wouldn't fit. Over a year ago I identified MMN as a possible cause but I just let it drop when the Neurologist said - nope. I should have pressed him on it - It ties in all my symptoms, particularly those he thought were unrelated. And I could have started treatment six months ago.
http://www.medhelp.org/forums/neuro/messages/34499.html
http://www.medhelp.org/forums/neuro/messages/34531.html
After undergoingg nerve decompression surgery for PINS syndrome (which was ineffective and ultimately unnecessary) I was sent to an orthopedic specialist who , after testing believed I had a neurological disease (He thought ALS) He sent me to a neurologist who believed it was, at first, TOS - thoracic outlet syndrome - and sent me for 8 weeks of PT. When that didn't work, he referred to an orthopedic surgeon in Boston for another nerve decompression surgrys - this time between my shoulder and elbow.
http://www.medhelp.org/forums/neuro/messages/34799.html
That orthopedic surgen spent about 10 minutes with me and sent me to a neurologist with a sub specialty in neuromuscular diseases and autoimmune neuromuscular diseases. He identified it as probable MMN and then confirmed in after 2 hours of nerve conduction and EMG studies. Next week I get to talk to him about treatment
I'm really writing this to encourage anyone who has an undiagnosed condition to really press their doctors about why specific diseases wouldn't fit. Over a year ago I identified MMN as a possible cause but I just let it drop when the Neurologist said - nope. I should have pressed him on it - It ties in all my symptoms, particularly those he thought were unrelated. And I could have started treatment six months ago.
Post Comment
