← Return to Does anyone have neuropathy related to MGUS?

Discussion

Does anyone have neuropathy related to MGUS?

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

Comment receiving replies
@deborahjb

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.

Jump to this post


Replies to "I'm sorry you are experiencing this @quarksunite. I too have MGUS and numbness, which my hematologist..."

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 too haver severe neuropathy and carpal tunnel. There are many people with MGUS with neuropathy also I believe it's more than 20% . I believe there is much evidence linking it to MGUS