Connect
Comment receiving replies
@pmm hello. I was diagnosed about 3 years ago by an arthritis doctor after complaining about leg pain. I was sent to a hemotologist who told me this is not uncommon and just needs monitoring with blood work every 6 months. He also mentioned that a bone marrow biopsy might be in order. After complaining about new pains in my feet which I was told by a podiatrist was neuropathy, he again suggested the bone marrow biopsy. I had it in October and thankfully no dreadful results. I see the mention of body scans here. That was never mentioned to me so I’m wondering if I should bring that up to him next time
PS. I just found out that the hemotologist and neurologist think my neuropathy is due to MGUS. The protein spike causes nerve damage, so they say
Replies to "@pmm hello. I was diagnosed about 3 years ago by an arthritis doctor after complaining about..."
Connect
@positivethinking it’s amazing how much “mixed messaging” is disseminated by the various “ologists” I see. I have very well controlled type 2 diabetes but they all attribute my neuropathy to that. I see a neurologist, hematologist/oncologist, gastroenterologist and very well-trained PCP who all weigh in on symptoms that may or may not be attributable to MGUS.
My take away is that it doesn’t really matter as long as I am trying hard to do my part with dietary and medication management. I think MGUS is not a benign element and is, at least partially, responsible for my neurological involvement.
I am taking pregabalin (100mg x2 daily) for neuropathy pain. I tried gabapentin, but it made my fingertips tingle which to me seemed an unsatisfactory side effect.
My m spike is very low. Who knows.
One of the things that they look for when assessing progression of MGUS are bone lesions. So I have scans every six months to ensure that my bone integrity is good. That was actually how my MGUS was found. I was rear ended and in the subsequent ex rays, there was a dark place on my C2. Subsequent CT scans showed that the spot is attributed to arthritis and is not a bone lesion, but my blood tests showed that pesky M paraprotein and hence my MGUS dx.
So I would definitely encourage all my fellow MGUS travelers to insist on at least annual scans.
I hope your discussion with your Hematologist/oncologist is productive. Make sure that the need to get a bone marrow biopsy (or any invasive test) is explained to your satisfaction. Will you let me know how it goes?