Tremors: I've seen a few references here... - MPN Voice

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Tremors

Kerri2 profile image
17 Replies

I've seen a few references here regarding "tremors ", I have noticed increase in tremors in my left hand when holding light items like papers. Is this related to ET or hydroxyurea medication ? My boss questioned me about it this week said someone in the office commented. Looking for spring wardrobe with pockets.

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Kerri2 profile image
Kerri2
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17 Replies
lizzziep profile image
lizzziep

Hi there. I have ET, and am on Hydroxycarbamide and aspirin, occasionally I get a light headed, shaky feeling, my hands shake a bit and I feel hot. It soon passes though. I have no idea if it is ET or drug related, so you're not alone. My husband has never noticed, but then again I could shave my head and paint it blue and he probably wouldn't notice 😳😄. I've mentioned it to the haematologist but just got blank looks, specialist nurse said it was hormones, as I'm in my 60's that's unlikely, so it remains a mystery!

Best wishes

Lizzie

JLTINA profile image
JLTINA in reply to lizzziep

Hi, I'm 26, have ET but not taking Hydroxycarbamide (I'm on Anagredlide).

I have also been having tremors recently and certainly the light headedness, shaking and over heating. So maybe it is ET related, not the medication.

Justin

in reply to lizzziep

Hi Lizzie, Funny you should mention this , i have been getting shaky hands of late , im only on Asprin although have ET jak2 pos .I did mentin to Gp last week she thinks its too much caffinene ! like 4 cups of tea,!! x

Doggy555 profile image
Doggy555 in reply to

Just Dx with essential thrombocytopenia, jak 2,

6 months earlier Dx with essential tremors, doc said it was age related. I just started the meds , so it is not the meds. The hemotologist said it’s not related, i joined this site to see if others have this symptom. It effects my left hand and lower left jaw ). Are the registering people’s symptoms? I also just noticed ridges on my fingernails

Kerri2 profile image
Kerri2 in reply to lizzziep

I also have over heating, past hot flashes but maybe we're going in reverse.

Mazcd profile image
MazcdPartnerMPNVoice

Hello Kerri, you should speak to your GP about this and also your haematologist for their advice as to whether or not the tremors are related to your ET and/or hydroxyurea, and whether or not they can do something to help. Kind regards, Maz

gset profile image
gset

I also have et and am on hydroxycarbamide and get the sense of tremors when overtired, rest reduces it for me. The overheating also affects me and although I originally thought it was menopause, I now find it is an advance indicator to becoming unwell, eg with a minor sore throat or other issue. Not sure what to do as everyone's symptoms seem to vary so much. Rest and life balance appears the best solution.

Karol_Rua profile image
Karol_Rua

I would hazard a guess it's ET, but maybe others would disagree. My ET seems to have ratcheted up - it's becoming more obvious to me. I was diagnosed 14 years ago but only in last 2-3 am I really fatigued and observing my tremors. I'm now officially dreadful at applying makeup.

On hydroxyurea since Jan 2015 and I cant say the tremors have increased significantly since then so maybe it's ET??

Good luck with the new wardrobe!

(It is embarrassing at work etc when one thinks you're a) nervous, b) drunk (I don't drink!) or c) on illegal drugs?!)

Kerri2 profile image
Kerri2 in reply to Karol_Rua

My employer is always going on about the need to hire younger people because most of us are approaching retirement age. I guess they're always hopeful. We're so into HIPA here in the US just thought it weird that he would ask. Maybe I can blame any errors I make in chemo brain.

jillydabrat profile image
jillydabrat

Yes, I have PV and always get the tremores, always when I am over tired

nodmeister profile image
nodmeister

hi Kerry2. I have just been diagnosed with E.T. BUT in this case it stands for Essential Tremors! The Neurologist said that they are not related. I also get tremors all over but my right hand is the worst. I am right handed. Betablockers are usually given to help but I just didn't want anymore drugs at the moment. Just think, Essential Tremors and Essential Thrombocythemia....... I have E.T.◻ !!!!!!!!!!!!!!!!!😁 Get it!!! Ha, ha.

Nod

Doggy555 profile image
Doggy555 in reply to nodmeister

Just Dx with essential throbcythemia. But I noticed the tremors 6 months prior and was Dx as age related essential tremors. Hematologists did not state the connection. I wonder if they have more info since your post?

nodmeister profile image
nodmeister in reply to Doggy555

I wasn't on any meds when diagnosed with Essential Tremors.

mickey64 profile image
mickey64

Hi Kerry when I was on HU I would get shaky almost like a sugar low. I just don't think the Dr's know a whole lot about all the possible symptoms more then they did a few years ago. They do these surveys on patient symptoms and that's how they mainly get there information. When I asked my local Hematologist a question he looks on the internet, LOL if I ask the expert MPN specialist he doesn't dismiss it but he says a lot of symptoms can be something else going on. If you google Hydroxurea you will get a whole slew of possible side effects it could be one of them but then again it could be just us. My older son was on lithium and his hands shook horribly, my other son was on a pain killer once and had the same reaction so I think a lot of the medicine gives sides effects it. I took an very common antibiotic that I had always taken in the past and all of sudden it gave me horrible palpitations, I google it and there it was, they had found that medicine caused cardiac symptoms in many patients.

As far as me I know I'm always thinking is this ET, is this something else, is this medicine etc etc. I just saw a conference in NYC the other day where they said they are connecting a lot of autoimmune diseases with ET or ET symptoms, its a fast growing time now and its just like anything the longer your on something (medicine)the more they will find out about it.

I am registering for a conference in NYC on Sept 30th, its called Woman and MPN. I very excited about this conference because it will have Dr Messa, Dr Moliterno, Dr Claire Harrison and many more, plus a TV anchorwoman who will be a keynote speaker.

BeckyM4 profile image
BeckyM4 in reply to mickey64

I wish I had a way to get to that conference! I have PV, and there are no MPN specialists where I live-I drive to St. Louis a couple times a year to see a hematologist. He isn't a specialist, but he works in close association with one. I get the shakes once in a while too. My GP just shrugged it off. He doesn't know much about MPN's but won't admit it to my face, just changes the subject. I have been on Hydrea and aspirin for 8 years, but just started with tremors within the past year. Who knows why.

mickey64 profile image
mickey64 in reply to BeckyM4

Becky go to MPN voice and there are conferences all over the US there might be one near you! Check it out there seems to be a lot of them.

ourlife profile image
ourlife

Hi Kerri2

I devolved the shakes early on with ET while on HU my Dr said it was not related so I was able to claim on our works private health insurance and went to see a neurologist, he diagnosed "a benign essential tremor " and told me it was probably a combination of my condition and medication. Over the years my tremor has got worse even on different meds.

Ourlife

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