Originally Posted by Msteven1

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.