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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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jinfresno | @jinfresno | Aug 5 4:32pm
In reply to @tracypage "I have hand tremors. I have probably had them longer than I knew about the MGUS..." + (show)
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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.

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@tracypage I don't have ringing in my ears, but have developed pulsitive tinnitus where I hear my heartbeat constantly in just my left ear. An ENT surgeon told me it could be because my blood is getting thicker but when I told the hematologist this, he laughed, So who knows??

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tracypage | @tracypage | Aug 5 5:43pm
In reply to @jinfresno "@tracypage I don't have ringing in my ears, but have developed pulsitive tinnitus where I hear..." + (show)
Profile picture for jinfresno @jinfresno

@tracypage I don't have ringing in my ears, but have developed pulsitive tinnitus where I hear my heartbeat constantly in just my left ear. An ENT surgeon told me it could be because my blood is getting thicker but when I told the hematologist this, he laughed, So who knows??

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@jinfresno Good Lord I hate when they laugh at us…I mean we do our best to understand… 🙄. I smell smoke where there is none and the explanations I have heard for that have been funny to outrageous…

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jinfresno | @jinfresno | Aug 5 6:26pm
In reply to @tracypage "@jinfresno Good Lord I hate when they laugh at us…I mean we do our best to..." + (show)
Profile picture for tracypage @tracypage

@jinfresno Good Lord I hate when they laugh at us…I mean we do our best to understand… 🙄. I smell smoke where there is none and the explanations I have heard for that have been funny to outrageous…

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@tracypage agreed! my first hematologist, despite my diagnosis asked if it could just be that I was depressed. WTF???? First, I am not depressed and second, how could that result in an MGUS diagnosis. Fortunately, he retired a few months ago.

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tracypage | @tracypage | Aug 5 7:29pm
In reply to @jinfresno "@tracypage agreed! my first hematologist, despite my diagnosis asked if it could just be that I..." + (show)
Profile picture for jinfresno @jinfresno

@tracypage agreed! my first hematologist, despite my diagnosis asked if it could just be that I was depressed. WTF???? First, I am not depressed and second, how could that result in an MGUS diagnosis. Fortunately, he retired a few months ago.

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@jinfresno WTactualH?

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kjoed53 | @kjoed53 | Aug 6 7:17am
In reply to @tracypage "@jinfresno Good Lord I hate when they laugh at us…I mean we do our best to..." + (show)
Profile picture for tracypage @tracypage

@jinfresno Good Lord I hate when they laugh at us…I mean we do our best to understand… 🙄. I smell smoke where there is none and the explanations I have heard for that have been funny to outrageous…

Jump to this post

@tracypage
Occasionally I smell cigarette smoke, and have for years. It's called phantosmia. I've been told that a sinus issue can cause it or that it's simply part of the aging process because our sense of smell is prone to misfire as we get older. It's annoying but I stopped worrying about it. I'd say I was having olfactory flashbacks to when I used to smoke and smoking was normal, but it is a very unpleasant smell to me now.

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