Quote:
Originally Posted by Run1968
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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Hi there I am a 20 year old. I recently was diagnosed with mmn as well (when I was 19). My concerns are almost identical to yours. I am getting very frustrated that my doctor knows very little about this disease and I am about to do my third treatment of ivig. To date I have had little to no improvement. I am lucky that it appears to be localized to my hand but does not mean it is not frustrating. I have constant twitching to the point where it effects me getting to sleep at times and cramping in my hand. Additionally I have some twitching in my tricep as well. My hand is weak but the weakness isn't apparent. The twitching is and I am starting to lose my patience with it. I don't know if my doctor has the right disease since my spinal tap came up normal. I do believe this disease, like many autoimmune diseases, is effected by stress. I was diagnosed while taking organic chemistry (I once wanted to be a surgeon) and it seems to make sense that stress can make it worse. My neurologist wants me to take antianxiety pills but I have many concerns with that as well. Does anyone else share these symptoms?
Additionally I thought it would be helpful to let you know that there is research going on in Italy with MMN that seems to be noteworthy. Also John Hopkins does research as well. The newest treatment I have heard for it is Rituxiamb (that might not be spelled right) a monoclonal antibody that attacks only certain antibodies that are attacking the peripheral nerve cells. Check it out. Best of luck to all and I am very happy I found a forum for this thing because with 1 in 100,000 there aren't too many people I can turn to to relate about my symptoms.