Quote:
Originally Posted by lee39
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
|
ok calmed down a bit now (lol)
i forgot to mention i did 5 weeks of apheresis then 6 months of cyclophosphamide ,the apheresis made me lose more muscle strength and use than the actual disease the chemo just made me sick for 6 months (which was handy when i was driving an 8hr trip twice every 2 week to see my daughter as my ex didnt want my daughter to see me waste away (thanks for that family court) .
fast forward 3 years of me going from job agency to job agency trying to find new work to not getting one interview. my ex moves to my home town and within a year my kid is now in my custody full time .(YAY)
i am still on intragam and am slowly noticing more weakness due to the fact you become immune to it after time .
my life is ok now but as you can see by my first post i have an anger issue due to not being able to do normal stuff with my kids and be a normal participant in the community .
i hope all the best for all diagnosed with Motor Neuropathy with Conduction Block and will say keep hope,,, stem cell research is our biggest hope (so if you do chemo save stem cells first).
and if any of you have any breakthroughs let us know as DR/PROFFS are just guessing
cheers and all the best
Lee