MGUS and hand tremor

Posted by jinfresno @jinfresno, Jul 9 1:16pm

I was diagnosed about 8 months ago. I have upper body feelings of weakness on most days. Recently I developed a small hand tremor. I am 69. My hematologist says the tremor is probably just due to age however I searched online and did see that hand tremors are highly correlated with IgM MGUS, so not sure what to think. Wondering if others have similar experience with tremors and/or upper body feeling of weakness. Thanks!

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swalex | @swalex | Jul 9 3:42pm

@jinfresno
Hi, I had a similar experience during COVID, but I received very little medical help. That led me to dive into the scientific research, gather the available evidence, and write about it in the hope that it might help others facing the same situation.
Anti-MAG Peripheral Neuropathy: Understanding a Rare Autoimmune Nerve Disorder
https://swaresearch.blogspot.com/2026/06/anti-mag-peripheral-neuropathy.html

tracypage | @tracypage | Jul 10 7:15am

I have hand tremors. I have probably had them longer than I knew about the MGUS (2016) or maybe about the same time. However they just changed to a more intense tremor that is now affecting my job. They are evaluating for anti-mag and cryoglobulinemia but I have other symptoms as well like intense neuropathy and intense cold as well as ringing in my ears, balance issues and headaches. My IgM has been hanging out around 1100 right now and has been as low as 800 and as high as 1340 this year. It seems to be a moving target. My symptoms have significantly changed in the last few months. I am positive for myd88 l265p.

swalex | @swalex | Jul 11 7:30am

In reply to @tracypage "I have hand tremors. I have probably had them longer than I knew about the MGUS..." + (show)

@tracypage

So sorry,
My IgM levels have been fluctuating.
I also experience persistent ringing in my ears (tinnitus),
particularly noticeable vision problems in my left eye,
progressively worsening balance issues,
difficulty navigating uneven surfaces, frequent headaches and
skeletal muscle weakness.

I might have either:
Waldenström Macroglobulinemia (WM) https://www.nejm.org/doi/full/10.1056/NEJMoa1200710
Or:
Other Lymphomas (ABC-DLBCL) It is also commonly found in activated B-cell diffuse large B-cell lymphoma (ABC-DLBCL) and a portion of marginal zone lymphomas. https://pubmed.ncbi.nlm.nih.gov/25723115/

tracypage | @tracypage | Jul 11 8:05am

Ugh, the headaches….. these things hurt. I woke up with one this morning behind my left eye.

swalex | @swalex | Jul 11 8:29am

In reply to @tracypage "Ugh, the headaches….. these things hurt. I woke up with one this morning behind my left..." + (show)

@tracypage
Me too. It is always my left eye and left side tinnitus.

tracypage | @tracypage | Jul 11 9:04am

The tinnitus is both sides for me and the pain moves. Yesterday it was the right side. But still wonder if some of that IgM isn’t near the spinal cord or brain stem. My levels are fairly low for these symptoms and my blood viscosity checks out, they tested it two weeks ago. I have been checked for AntiMag and cryoglobulinemia before and it was negative but we are looking again. I went to ENT this week and my hearing test checked out and my sinuses look good. Rheumatology didn’t see anything either. Running out of explanations. I am wondering if it is Bing Neel.

sledbetter | @sledbetter | Jul 12 1:39pm

I have low grade lymphoma and MGUS. I have one Rituxan infusion and wondered if anyone has experienced headaches with this…

3sew1 | @3sew1 | Jul 13 5:34am

I do not have MGUS but am an occupational therapist who has worked with patients with hand tremors from a variety of causes. I recommend you bring your concerns and the information you found to your hematologist again to see if there is something that can improve the tremors based on the medications you are on. Also ask for an occupational therapy referral and look for someone in your area that has experience in hand tremors or neurological issues that might cause them. There are strategies that might help manage them and there is adaptive equipment (weighted items) that might be of help in improving your function. Keep asking questions and good luck.

tracypage | @tracypage | Jul 13 12:18pm

In reply to @3sew1 "I do not have MGUS but am an occupational therapist who has worked with patients with..." + (show)

@3sew1 I did add weight to my camera and it helps tremendously! It will help me keep working for now. Also bought a step stool with a hand rail to help my balance when working.

carolm25 | @carolm25 | Jul 13 3:18pm

In reply to @swalex "@tracypage So sorry, My IgM levels have been fluctuating. I also experience persistent ringing in my..." + (show)

@swalex
I am in remission over 2 years from LDBCL after the Car-T therapy trial I elected. But I too have had tremors that seem to fluctuate with certain drugs, in my case more from Afib drugs since I take only one anti viral pill for the LDBCL. I also have what I describe as some background soft noise. But my blood counts since Car-T therapy have been abnormal and there was very strong fatigue for some time after the therapy. That is when the tremor really started. That fatigue has been reduced probably 75% but the tremor only about 50%. My Mayo hematologist/ oncologist says my blood could stay abnormal. That probably makes some fatigue more likely.
I am getting infusions to strengthen immunity after contracting pneumonia in February. That need fluctuates as does the tremors.
It’s difficult to determine where the tremor originates. My tremor is mainly in my left hand but can show up in my right when more fatigued.
Again, the drugs for Afib which also cause fatigue seem to have more impact. The cardiologist is planning with me to reduce that issue.

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