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Does anyone have neuropathy related to MGUS?
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (135)Comment receiving replies
So happy to see this topic! I have IgM Mgus and the neuropathy has been horrible. After a lot of tests to look at the progression last summer, because of the neuropathy, my oncologist sent me to a neurologist and a pain management specialist. The oncologist felt the neuropathy wasn't coming from MGUS because she didn't think my IgM was high enough. The neurologist said it is definitely coming from the IgM. I am negative for anti-mag and for amloidysis.
The neuropathy started as pins and needles and numbness but then progressed to everything from fabric to just how I rested my feet and legs -- hurt. My skin felt like it was on fire, my bones would sometime feel they had broken from the weight of socks on toes. I felt like I had bed sores and blisters were there were none.
Pain management put me on Cymbalta which felt like a miracle. Most of the neuropathy seemed to go away and I was suddenly sleeping at night. But then when we got to a 90mg dose, I started rapidly gaining weight. Almost 40 pounds -- I was gaining about 15 pounds every 2 weeks. It was crazy. So now they have me very slowly coming off the Cymbalta, I am at 30mg now and should be off in the next three weeks. The neuropathy is slowly returning and I don't know what I'm going to do beyond lidocaine patches. They gave me a small dose of gabapentin to test but they are presuming it will behave the same way as the Cymbalta with weight gain and don't really think it is a good route.
So the end result, I am all ears to whatever everyone says works for them.... I am terrified of being back where I was but last night I could not sleep with restless leg issues, my pajamas and the sheets were just uncomfortable on my legs all night, so I know this is starting to return.
I am positive for the MYD88 gene mutation and I am experiencing Immunoparesis with hypogammaglobulinemia but I only have 5% plasma and lymphoplasma involvement according to the last BMB and my IgM has remained stable - somewhat. It has fluctuated between 900 and 1400 and back down. Not enough for the doctors to consider chemo yet.
Replies to "So happy to see this topic! I have IgM Mgus and the neuropathy has been horrible...."
@tracypage WM specialists recognize that neuropathy does happen with IgM at those levels. WM experts do not "treat by the numbers" but treat for symptoms. The IWMF has listing of WM experts around the world that can consult with your current doctor. BTW several of those people are at Mayo.
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@tracypage hi Tracy. It’s so weird how different drugs impact people differently. I suppose it’s because our blood chemistry and everything else is unique. I was prescribed duloxetine (cymbalta) and didn’t like it at all. It made me feel somehow outside of myself. I was a clinical social worker who worked in mental health and in one form or another for many years. I feel like I owe an apology to everyone who was prescribed psychiatric medications and stop taking them because they made them feel funny. We sort of rolled our eyes, but the truth is out there.
I’m now taking pregabalin and although it does not eliminate all the pain, it helps tremendously. It definitely abates that sharp, unexpected and unexplained pain that I get in my feet and toes in particular. That was brutal.
I had to work with my neurologist to come up with a solution that was right for me, but I am giggling a little because he told me that when I got off the Cymbalta, I would gain weight.
Go figure.
I’d be curious as to how this works out for you if you’d let me know?