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Does anyone have neuropathy related to MGUS?
Blood Cancers & Disorders | Last Active: May 14 11:39am | Replies (102)Comment receiving replies
My PCP attributes my neuropathy to Diabetes (type 2 A1C of 6.8 well controlled by Metformin). She did refer me to podiatrist who said, “yes, neuropathy.” Then referred me to an orthopedic foot surgeon who turned me on to some very cool tennis shoes which he swears by and wears himself. (HOKA highly recommended… I bought two pair. I love them.) I was hoping, however, for a more permanent solution. So the orthopedic surgeon referred me to a different podiatrist, who recommended some metatarsal pads. She said I was beginning to get contraction in my toes. Wow. It just keeps getting better. Pads give me no relief, by the way.
But to get back to your connection between MGUS and neuropathy… My neuropathy started right before I was diagnosed with MGUS. It does seem highly coincidental. My hematologist/oncologist poo poos my suggestion that the two might be related. It seems that if you have a diabetes diagnosis that is the go to connection.
It is frustrating that medical professionals just seem to encourage one to live with neuropathy rather than to find some legitimate treatment for it. It keeps me from being as active as I want to be and although there are some days where I feel like I have no energy at all, most days I want to get out and do things. It’s difficult to travel and go on walking tours, etc. when your feet hurt every time you take a step. Additionally, I get these random sharp pains in my toes and feet that are annoying. Sometimes they take my breath away.
I wish that there was some magical remedy for neuropathy and if anyone finds something out there, I am more than interested.
Replies to "My PCP attributes my neuropathy to Diabetes (type 2 A1C of 6.8 well controlled by Metformin)...."
I was diagnosed with metatarsalalgia for extreme pain in the right foot I do have neuropathy from previous chemo on the left foot. In the summer I will have Vionics flip-flops. When I first had the pain a podiatrist recommended bionics and I also bought shoes I was wearing pads for the metatarsal ultra, but lately I don’t have to wear them I wore them almost 3 years! The pain on the right side was beyond excruciating. Also have that pain in my jaw bone. And I wonder if that’s related to MGUS?
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I understand your pain. I was prediabetic at one point and doctor put me on metformin for a while but then my A1C improved and no longer prediabetic so new Primary Care Dr took me off. Several years later I am struggling with numbness in my feet. Went back and forth with doctor about leg pain too and seems like no one really knew what my issue was. I ended up with new Primary care again and he referred me to a neurologist, Dr. DeSousa. He was so thorough in my examination with blood work, urine work (collected a gallon of it seems like), and MRI of spine. While I have degenerative disk causing the leg pain, he immediately referred me to an oncologist hematologist, Dr. Reitz, who did bone biopsy almost immediately after doing his blood work. MGUS 7%, and could live long time and never change or change to cancer. I was to have 6 month blood work then another biopsy 1 year later. At my 6 month blood work my IGA lambda light chain increased. He said they normally look at protein and another factor (can't think of it off hand). But when I pointed out how the lambda changed so dramatically and beyond the normal range he ordered another biopsy. I now am undergoing treatment for multiple myeloma. He said it is rare to catch this disease so early. So far treatments are improving my numbers and should go into remission. Will see in couple months.
Having been diagnosed with MGUS early is invaluable. I believe that IT IS related to the neuropathy in my feet (although Dr. DeSousa says I do not have neuropathy in feet per his neuro testing). I know what you are saying about walking and being active. Balance is becoming an increasing concern for me. It would be good for researchers to start investigating the link.
I know recently there have been 2 new companies that are advertising neuropathy treatments but they also talk about diabetic neuropathy. Haven't investigated them yet to see if they can help with my feet.
Many blessings over you and your healing.
Teri