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Old 05-13-2009, 09:20 PM
Run1968 Run1968 is offline
New Member
 
Join Date: May 2009
Posts: 4
10 yr Member
Run1968 Run1968 is offline
New Member
 
Join Date: May 2009
Posts: 4
10 yr Member
Confused Another MMN DX

Was diagnosed with MMN in Jan. 2009 and started ROUND 1 of IVIG in February (5 weeks: 5 days, 2 days, 2 days, 1 day and final week 1 day). Noticed improvement in left leg after 4th week ... meaning that I could walk without limping, but still couldn't walk fast/run.

After about 2-3 weeks, the "high" wore off and needed to start back on IVIG. After a prolonged battle with my insurance company, started ROUND 2 of IVIG mid-April (2x per week for 4 weeks). My leg has improved slightly, but nothing like during Round 1.

My doctor wants to start me back up on IVIG treatments again ASAP, but need to deal with insurance approval again ~ crazy and infuriating!!!

I'm 40 yrs old and prior to all this (just over a year ago) led a very active lifestyle (hiking, skiing, running, playing soccer with my boys). I find myself wondering if the doctor has the right diagnosis? With such a rare disease is enough known about the IVIG frequency or is it just trial and error? Am I missing out on some treatment we should be doing now before nerve damage is done that can't be repaired? What more can be done aside from IVIG? Diet changes? If I limp at 40 what will I be doing at 60 yrs old???

Well, thanks for "listening" to me vent. It's good to have a place to go to do this and not feel so alone. Appreciate hearing all your stories and what's working for you.
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"Thanks for this!" says:
(Broken Wings) (06-08-2009)