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Does anyone have neuropathy related to MGUS?

Blood Cancers & Disorders | Last Active: May 14 11:39am | Replies (102)

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@wendy50

Thank you for answering! I’m brand new to this website, so I’m just learning to use it. We have a lot in common- sorry for us!

In August of last year I went to the er with severe back pain. I learned a lot from the test results. I had three compression fractures in my lumbar region. I also had nerve compression at one level and they suggested surgery for L5-S1. There was severe compression on both sides. I had cementing of the three fractures. Then another one collapsed and I broke my collarbone in a fall. So, another cementing and a nerve block for my left leg. I started PT for my weakened back. My doctor discovered osteoporosis and I began monthly injections.
My back had become so weakened I was unable to swim( I used to swim a mile every day).
PT was designed to work hard so I could walk normally. Instead, my knees, which were bone on bone blew out. Intense pain in the right unlike before. ( I had managed my arthritic knees with injections every three months)
In May I had a total right knee replacement, at 73. I have been in PT now for two months. At ten weeks out I can walk without an aid. But I have a limp and can’t walk far. My left leg is weaker than the right! It’s like there is a short circuit from brain to left leg, in terms of stride. And from PT I know the quad muscles are weaker.

Add to that, I also have PN and can’t feel my left foot. It seems to be moving into my ankle. Is that possible?

I was born with MTHFR double allele mutation, have MGUS, and developed hemolytic anemia. I don’t know if any of these conditions contribute to my current challenge.

Any suggestions out there? All I want is to be able to walk my dog and travel again!!

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Replies to "Thank you for answering! I’m brand new to this website, so I’m just learning to use..."

So sorry to hear what you’ve been through. I’m glad you’ve been able to get the medical help to stabilise your back as much as possible. And it’s very nice to hear the knee replacement is working out. The gene variant/mutation you have, does that impact on ability to process iron/folate? It’s been years since I was an anatomy teacher (and I have memory loss and cognitive decline corresponding with MGUS development), so I can’t quite remember with accuracy that particular gene change and the outcomes on functional biochemistry.
I can relate to the PN in feet/ankles - I can’t feel it from just above my ankle and down (I shut my foot in the car door yesterday when it fell closed and didn’t notice it was bleeding inside my shoe until I got home and took off the shoes). I have loss of vibration detection from nerve root compression in my spine on the left (but vibration detection is present on the right just under my knee - left leg cannot detect it. That’s one rough way to see if it’s spinal or PN, maybe..?)
Haemolytic anaemia sounds like a serious complication for MTHFR?