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Old 01-08-2023, 11:18 AM
smittymom3 smittymom3 is offline
Newly Joined
 
Join Date: Nov 2015
Posts: 2
8 yr Member
smittymom3 smittymom3 is offline
Newly Joined
 
Join Date: Nov 2015
Posts: 2
8 yr Member
Default I have IgM MAG too!

Hi, I have been diagnosed with IgM MAG autoimmune as well. I live in Maine and it took several years to diagnosed ultimately at Mass Gen H in Boston. I am currently a week shy of my 69th birthday but I was diagnosed, typical with the disease at age 50. Yes, tingling first in feet, then legs, then "ticks" that disappeared. At first my balancing was ok but as you know the progression is very slow even for me to see differences. I use "bench markers" of physical effort to detect changes including just stairs in my house, walking up hills in the neighborhood. Currently my feet and legs well past "tingling", now numb, cold feeling. Since the bottom on the feet are where our balancing comes from, that too is now more significant especially at night without light as with going to bed. I get out of breath easily but only doing different movements since those muscles now no longer work (the nerve fibers going to them not working). I was treated initially with Rituximab infusions but apparently I am one of the 50% it does not help. My neurologist at MGH says nothing more they can do for me. So I exercise at the gym, 2x per week, vigorously with weights and aerobic. I also walk the golf course during the summer playing nine holes weekly and I take Tae Kwon Do classes also 2x week, also vigorous physical effort. All of these things seem to help including my overall health. But I have had two unexplained heart attacks or cardiac arrest in the past ten years. I have never smoked and work out as you see, no weight issues. I have told my cardiologist that the Igm MAG protein could be the reason but no response. Since few medical are familiar with this condition, I get a lot of stares of confusion from the MD. My arms and hands beginning to become affected now but I still work and use the computer but it is hard to sign my name. Yes the progression is slow. I do have "attacks" at times after which I see difference especially more now with my age. But I do not realize it until latter. I hope this is helpful. You will be ok if you take care of yourself. Maine Genie, Steve
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