hand tingling

[Peachjoy]

I have ET jak2+

My hands constantly tingle. It’s not painful, unpleasant or disruptive.

I know it’s considered a symptom of ET, but I’ve read it could also be a sign of B12 deficiency.

has anybody experience of this?

[hunter5582]

There are a number of things that can cause the tingling in the hands. A microvascular symptom of ET is the most likely cause but not the only one. There can also be a vitamin deficiency as you note as well as a neurological cause. It is very easy to check on your Vitamin B levels. it is a simple blood test.

Suggest letting your hematologist know. The doc can order the relent blood work. It may also be suggested to up the aspirin dose to 2x/day as some people find this relieves the symptom.

Hope you get it sorted soon.

[Peachjoy in reply to hunter5582]

hi Hunter. Thank you for your reply. I received it just before I saw my ET specialist today.

I brought up my hand tingling, and also enquired about a possible B12 deficiency.

He assured me that I’m not B12 deficient as there would be signs in other blood components. So that was reassuring.

Because my tingling/glowing feeling doesn’t disrupt my life, my platelets are steady at about 620, my cardio vascular risks are negligible (except for my ever increasing chronology (🤣), 63, and no other health issues, for the time being I’m to just continue treatment with my baby aspirin.

Thank you for all the information and recommendations you share with us.

[hunter5582 in reply to Peachjoy]

That sounds like a very reasonable and prudent plan. If the symptom escalates you can always change the plan.

As we deal with ET, PV, HTN and other various issues we all must also address OLD. OLD is progressive and cannot be reversed - but is sure does beat the alternative!! 😲

All the best my friend.

[Peachjoy in reply to hunter5582]

thank you, let’s keep on getting old🤣.

Best wishes back to you too x

[Wyebird in reply to Peachjoy]

hi, I can’t function with platelets higher than 450 . I know you are not on hydroxi but if you took it maybe your symptoms would go.

It’s a case of weighing up what is best for you. Good luck

[Peachjoy in reply to Wyebird]

hi Wyebird,

You’re right, not on Hydroxycarbamide (yet).

The only symptoms (I’m aware of), are the tingling s in my hands, which really doesn’t bother me. It does seem a bit full on to take Hydroxycarbamide just for that…

However, maybe there are other things I have, that I’m not properly aware of which relate to my ET…hmmm.

I am realistic, and know that as I keep creeping upwards from 63, I will have to confront my reluctance to the therapy.

[EPguy]

I've had that tingling since before my Dx. It continued on HU but was better as my blood counts normalized. It has improved more on IFN (Besremi) I still get it sometimes, but now it indicates low blood pressure.

[Peachjoy in reply to EPguy]

it’s a strange thing, which as we all find out can be due to different things.

I sometimes worry that I/we make connections between bodily symptoms/changes and assume they’re due to our MPNs.

[EPguy in reply to Peachjoy]

Re connections: since my whole life, I can scratch firmly my right ear lobe and get a itch/twinge on my right lower arm. Eastern medicine makes use of these sorts of connections. (doesn't work on the left side)

Maybe all we need to do is scratch the right place and our MPN is fixed...

[Peachjoy in reply to EPguy]

fab idea!!!

[ElsieR]

Hi, I have been on Hydrox for some 10 years, had tingling but not bad, lately it has been very bad and my haemo says it is my neck (have always had that problem) so have booked an osteopathic app after having neck xray. Have been on bimonthly B12 for a year! As well as ET I have AF and COPD!!! I am greedy, but at 84 I really don't care, I keep taking all my pills and continue to enjoy life. Love Elsie xx

[Peachjoy in reply to ElsieR]

hi EldieR,

Fantastic to be loving life!😘

Hope you can get your neck sorted. X

[JOY2THEWORLD49]

Hi

I was examined due to B12 deficiency and tremor not tingling.

Tingling would be more due to a blocked artery or vein.

B12 revitialized with SOLGAR gold top B12 nugget under the tongue 2 days running every week.

Meds for essential tremor are a glass of red wine before a stressful situation or beta loc BB.

I had a artery release in 70s due to tingling in my arm. Op under and side of my neck. I had clips.

cheri jOY. 73. (NZ)

[Mostew]

I do agree its hard to seperate what causes what .

I once had paint stuck in my hair . Wasnt aware it was that and thought m y scalp because of Hydroxycarbamide !

What other symptoms are you experiencing?

[Peachjoy in reply to Mostew]

yes Mostew,

It’s so easy to blame every little twinge or hiccup on ET!

I don’t really think I have anything else.

Until a month ago I thought my afternoon fatigue/exhaustion was ET …but actually, now it’s TA stopped , I think it was a residue from having COVID in July.

I do have a noise/buzzing in my right ear (tinnitus?)…mentioned to specialist, he says it’s not linked to ET

[EPguy in reply to Peachjoy]

Tinnitus can be MPN related. I've had this connection my self as have many here.

From one such reference: (there are plenty):

"he was now dealing with pulsatile tinnitus, a type of ear noise that results in a very loud whooshing or buzzing sound"

mpnresearchfoundation.org/p...

[Peachjoy in reply to EPguy]

hi, yes, I’ve read about the link of tinnitus and ET.

[Yvette49]

hi, I have PV, and I get tingling hands especially when I am walking, think it’s because hands/arms are down ? It’s reallly odd isn’t it.

[Peachjoy in reply to Yvette49]

yes, it’s very strange. Thankfully it doesn’t bother me

[Yvette49]

me too…not like the dreadful itch after bathing 😟