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Anti Myelin Associated Glycoprotein Antibodies

Neuropathy | Last Active: Oct 25, 2023 | Replies (11)

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@savomic

I have been dealing with health issues for 4 years now. Before March 2019, I was a life long athlete, marathons, triathlons and Ironman and within a few months, I could only walk short distances, difficulty with stairs, no balance, weak muscles, no reflexes and the list goes on. I was first diagnosed with Guillan Barre Syndrome followed with 50 IVIG treatments which ended up being the wrong diagnostic. Then 2 years ago I was diagnosed with IGM paraprotein neuropathy, later, Anti Mag Neuropathy and now DADS-M with Anti Mag with MGUS. How rare is that. Three different diagnosis with three different neurologists. I had 4 rounds of Rituximab within a month 2 years ago with no improvement. My Oncologist suggested I try Rituximab every 3 months for one years see what happen. After 3 treatments, still no change but they tell me to be patient as well. Three years of physical therapy helps me with my balance. I wish I could do more exercise but I can't do anything that involves my legs. I do rowing, handcycle, swimming and upper body weights. I feel there is more to it because now I have memory, cognitive and speech issues following a double lung embolism. I have more symptoms but the list is too long. I am 62 years old and feels like 80+.

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Replies to "I have been dealing with health issues for 4 years now. Before March 2019, I was..."

So sorry for all your symptoms and loss of physical abilities. When one has been as physically active as you were and still relatively young, can certainly understand your frustration at having to adjust to the neuropathy now. Good luck on this journey and hope the Rituximab helps at some point. My oncologist/hematologist said that if my infusions don't show any improvements over time, perhaps they will at least help keep the neuropathy from getting worse than might otherwise. Probably know way of actually knowing though.