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@terry1976

I have been doing all the reading and research for my spouse, diagnosed in 2019, by his astute PCP, just before Covid and slow to get to see a heme-onc for further eval. 6 months monitoring by blood work. Nothing on imaging in 2019 and it has not been repeated. I could not see heme-onc with him and once he heard cancer his brain did not absorb much of, if any, of the rest of the conversation. Patient education was not offered then or since. He cannot wrap his head around the fact that his will likely never progress. In his head he has cancer.

His primary symptom was peripheral neuropathy and as a very active athletic guy with other health issues, that was for him a last straw moment. He's obstinate about disregarding dietary changes, so I can only encourage--outside my circle of control. The PN in MGUS seems to be paraproteinemia--driven by accumulation of excess proteins (the antibodies) on the myelin sheath of the nerves, as I understand it. Poorly understood in the neurology community at large. The typical pharma--pre-gabalin, gabapentin, lyrica--are poorly tolerated by him and many others, so not worth the brain fog/disorientation/loss of balance, to pursue those
Stay away from B6--check your supplements that you are not exceeding dose--should all be achieved by food choices, not supplements--it is similarly a cause of PN in those who have not had other underlying factors.
He has become more and more sedentary over the intervening years, suffered bouts of gout/inflammation, that I suspect are separate from the MGUS but pile on to his symptoms and thus add to his depression.
Finding new hobbies has been something he's only just started to discuss openly, to move on from his funk. He sees a MH specialist but irregularly. His depression and anxiety can ripple out and make our relationship struggle in real life. So as his support person I have to be certain I am getting MH support. Being open and honest with your real life people is important. I hope you have that kind of ongoing support

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Replies to "I have been doing all the reading and research for my spouse, diagnosed in 2019, by..."

Thank you so much for this share. I can relate to so much you said. I was diagnosed earlier this year. I am a 65 year old female. I can’t get the cancer word outside of my head. I am taking supplements maybe too many. On this site many recommended turmeric with Curcumin which I am taking. Can you tell me about his diet?

My peripheral neuropathy exhibits as restless leg syndrome at night. My neurologist prescribed .25 mg before bed and it works for me. He also prescribed Lyrica ( gabapentin ) with mixed results. Life at 84 is not as much fun as I thought it would be, but the alternative is not yet desirable. Every day is a gift.