Does anyone have neuropathy related to MGUS?

I have had two bouts of trigeminal neuralgia. I never thought to connect it with MGUS.

I'm sorry you are experiencing this @quarksunite. I too have MGUS and numbness, which my hematologist told me was probably not caused by my MGUS. But I think it's too much of a coincidence to not be linked. I'd be interested to hear if there is any supplement, drug or therapy that alleviates it too.

I have a burning in my right foot. My doctor tested me and said I had neuropathy. This blood test also showed another problem. Dr sent me to an immunologist who ran tons of blood tests. This is where the MGUS showed up. I was then referred to a hematologist who follows me. So the neuropathy lead to the MUGUS diagnosis.

I also have just recently been diagnosed with MGUS and Trigeminal Neuralgia. I have the pain in my jaw all the time, and thus have to take Pregabalin 50mg twice a day. I would never have known about the MGUS, except my neurologist requested the necessary blood tests to eliminate this complication and there it was. The Hematologist has been very positive about it and says if my next test has not changed I do not have to have another test for another year. I was informed that the Trigeminal Neuralgia was caused because the myelin covering on our nerves becomes worn as we grow older and when it is gone, the nerve frequently presses on a vein and that is what causes the pain (I am 92). Has the doctor given you any explanation of the cause of your pain?
Gina5009

Hi Gina,
My neurologist gave me the same explanation for the trigeminal neuralgia. The first time it appeared, I was treated with Gabapentin, and it eventually went away. The next time it was in my late 50’s. It was pretty bad, so I had surgery to place padding in between the nerves. That worked. As for the MGUS, It was discovered in routine bloodwork over 15 years ago. I see an oncologist once a year, but so far. So good! I’m am currently 64. Best wishes! Susan

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.

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

That is great news about your MM treatment impacting your numbers so quickly. Fingers crossed for a complete remission!
I guess I’m going to have to break down and go to a neurologist. No one has suggested one yet, but I do see these commercials on television that talk about neuropathy treatments. I’m willing to try anything at this point. When you can’t walk without discomfort or downright pain, it really cramps your style, eh?
Thanks for your reply.
🤞🏻 on your continued good outcome.
Patty

Let me know if you decide on neuropathy clinic. They are typically not associated with a hospital if I understand correctly. My Neurologist was part of the Mercy network here in Oklahoma City.
Blessings over your situation too!
Teri

Patty, forgot to mention, like the other comment, I am on gabapentin and it has helped some with the pain, but not the numbness. I am up to 300 two in am and 2 in pm. They said I can go up but figure I would try to tolerate as much as can at this level in case needed to go higher in future. Blessings, Teri