Neuromuscular In memory of Rose Marie.


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Old 08-01-2011, 02:13 AM #9
lee39 lee39 is offline
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Join Date: Jul 2011
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10 yr Member
lee39 lee39 is offline
New Member
 
Join Date: Jul 2011
Posts: 2
10 yr Member
Default my story

i found the info here good, lots of different stories help too .
i myself have had Multifocal Motor Neuropathy with conduction block for 11years ,i was diagnosed within a week of seeing a dr about my fingers arching backwards and had not experienced any weakness as of then ,they put me on intragam infusions every 3 months after about a year i had severe weakness and had to leave work (lighting tech/rigger) within another year weakness had progressed and treatment became monthly then 3 weekly and the dose increased ,i am now on maximum for my weight (60gm) and have lasted about a year at this before noticing weakness at end of 2.5 weeks ,i have lost use of individual finger/thumb movement ,wrist movement on both hands ,left arm is useless as is left leg ,i have foot drop in both feet and have to wear orthotics to walk without tripping over .
it has ruined my life ,i used to be active and do physical activities as hobbies and work ,i was diagnosed 6 months after my daughter was born and my Marriage broke down when i had to leave work .
more to come when i can express how it has effected my life without becoming so angry
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