Hi to all!

I have read some of your comments and questions, concerns about the IgM MAG. I am currently age 68 first diagnosed in 2005 so I have had a long time to experience this condition. It took a long time to get diagnosed but finally a neurologist did at Mass Gen in Boston. It started out with just the tingling, in feet and the arm tremors. Some "ticks" (uncontrolled jerking) but these have gone away. Mass Gen immediately started me on a 24 regimen of Rituximab but this did not work, no relief. Apparently 50% do not. My neurologist at Mass Gen tells me there is nothing more they can do.

I want to tell all that this is a slow acting condition. Sometimes a year or two will go by and I think nothing has happened when it has. I use "benchmark" physical activities like simply climbing stairs in my house and seeing the difference over 6 months. Then again, I believe I have "attacks" of the antibody not realizing this has happened until after the fact and my condition has worsened.

At this point I have had this disease now 17 years. I can still walk, but not run. Tingling in my legs all the time, both and the arms hands just starting. Pain in my feet all the time. I have gotten use to it. The Mass Gen neurologist says my "balancing issues" caused by my feet condition since the sensory response to my brain for balancing is through my feet. Otherwise I am ok, no other medical issues I am aware of except maybe my heart. I have had one heart attack but it maybe unrelated. High BP too under control with meds

I get "out of breath" very easily with simple activities but usually from something new I am doing. I have been tested for heart problems, "stress tests" all normal. But blood tests indicate that it is all muscular with the loss of function. The strength is my legs is almost not there due to atrophy I believe

My suggestion? Keep moving! I currently I go to the gym (planet fitness) twice weekly and workout vigorously. I also play golf weekly (here in Maine when there is no snow on the ground!) which I walk all nine holes. I also take Tae Kwon Do (not an advanced green belt) which is also very vigorous. I think these physical activities are doing a lot! Otherwise I modify my activities where necessary (light on going to bed as the darkness causes me to fall).'

By exercising my legs whenever I can, I keep those muscles that I can still use in good condition as much as possible. Strengthening them at the gym, legs doing a lot. TKD provides a totally different exercise pattern.

I hope this is helpful. Hang in there and do no let it get you down emotionally.

Maine Genie