Discussions By Condition: Muscle conditions

multifocal motor neuropathy

Posted In: Muscle conditions 2 Replies
  • Posted By: Anonymous
  • July 19, 2006
  • 08:20 AM

Hello to all others that suffer from this relatively rare disorder. I was diagnosed with dysimmune type Multifocal motor neuropathy a year ago. It has affected my left arm, which has lost some function, muscle and I have a wrist and finger drop. I am unable to lift my fingers from a flat surface and have lost strength in my arm. I have two days of IVIG treatment every four months and this seems to help. Before my first treatment, I was unable to play the piano. I haven't stopped playing since and I am almost into my 4th treatment. The treatment seems to halt the progression of the disorder and is the only therapy that does not 'suppress' the immune system.
I hope there are some others out there who would like to share their experience in this forum

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  • I have the same problem but my treatments are much more aggressive. 5 times in 2weeks to start. Then, once every 2weeks. This has not been as effective as I was hoping. My doctor is sending me in for another 5 times in 2 weeks with hopes that there will be more progress.The nerves take time to regenerate. Depending on how much damage someone has it may take 6 mos to see significant improvement. If IVIG is not effective than other avenues may be nessesary. I am a guitar play and have been a proffesional musician for 30 years. I will fight this condition as long as I can. I have been learning new ways to finger chords and doing what ever it takes to stay active. Think positive, you can live with it but you have to be on top of it and find a good doctor that is familiar with this disorder. Good luck and God Bless!
    Anonymous 42789 Replies
    • September 23, 2009
    • 09:57 AM
    • 0
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  • Hello to all others that suffer from this relatively rare disorder. I was diagnosed with dysimmune type Multifocal motor neuropathy a year ago. It has affected my left arm, which has lost some function, muscle and I have a wrist and finger drop. I am unable to lift my fingers from a flat surface and have lost strength in my arm. I have two days of IVIG treatment every four months and this seems to help. Before my first treatment, I was unable to play the piano. I haven't stopped playing since and I am almost into my 4th treatment. The treatment seems to halt the progression of the disorder and is the only therapy that does not 'suppress' the immune system.I hope there are some others out there who would like to share their experience in this forumI lifted weieghts in 2002-2003 afther soreness my left bicept stop working . in 2008 my left hand started to contract afther i stoped ivig treatment . i was frustrated becouse i did not see any improvement . i belive once you start takeing ivig you cant stop becouse it speeds up the process . 2003- 2008 my condition progressed slowly . but when i started treatment i started expieriancing cramping in muscles i was stable while takeing ivig when i stoped with out docters orders i went from doing push ups to not being able to do push ups or put my left hand flat on a surface. i was also affected severaly during placibo stage in reserch on my right arm and hand
    Anonymous 42789 Replies
    • October 13, 2010
    • 09:09 PM
    • 0
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