Hi, I’ve read that some people with MPNs suffer from tingling in various parts of the body .
I was diagnosed with ET earlier this year and am just taking aspirin at the moment. Although I have had tinnitus for a number of years - just after getting my diagnosis, I started developing tingling in my legs and feet and this seems to have now moved up through my body to my arms and hands. In some respects it seems to me to have been triggered by the stress caused following my initial diagnosis (and a bereavement a few months later).
I know a lot of people mention the tingling with ET , but is it constant - as mine appears to be, and do any of the other treatments people take reduce or remove this feeling? It’s not painful as such, more an irritation /distraction but I’m worried, given that it appears to have spread, that it is some additional neurological problem that is going on.
Thanks
C
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Cb1001
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Hi Cb and welcome to the forum. I'm Etjak2. You are right in saying a majority of people with Mpn's who have symptoms complain about tingling in the body especially the hands and feet. Before I was diagnosed it was a major bugbear of mine and something I described as having 'a nest of bees buzzing away in my body'. Symptoms Were much improved when I started Hydrea and aspirin. I suggest you talk to your Consultant if it becomes a problem as at the moment I see you just take aspirin. If symptoms do become too much,their are different medications to help ease them. Tina.🤗
There are two different sources for the tingling sensation. One is neurological. The other is microvascular. Since you have ET, it would make sense to focus first on the microvascular element. People with MPN are more prone to issues with how our blood cells interact with the vascular endothelium. This can cause a number of issues, including erythromelalgia and more subtle forms of tingling/pins-and-needles in the limbs. It is not actually about the number of platelets since platelets comprise such a small fraction of your total blood volume. It is about how the blood cells behave. When this is the issue, then addressing the issue is altering the way the blood cells behave. This is often done with aspirin. Some people need more than one low dose aspirin/day. Some docs now recommend 2/day (81mg bid).
Hydroxyurea is used for cytoreduction. It also has a secondary benefit in reducing microvascular symptoms. If aspirin alone is not adequate, then it is an option to explore with your care team. As Tico noted, it can help with this symptom. There are additional option you can explore with your care team.
I did start experiencing the severe tingling-pain-burning in the toes as a PV symptom. The right dose of aspirin was all I needed to stop this problem. It turned it off like a light switch.
Thankyou hunter. good explanation of this annoying symptom. I have pv and had tingling in my limbs for years before being diagnosed which used to keep me awake at night. Once diagnosed and medicated, the aspirin and the hydroxycarbamide definately suppressed this nasty sensation . Being able to sleep undisturbed by it { most of the time } is a blessing.
Thank you hunter. Very informative.. I will see what happens at my next appointment. I’m still not convinced my haematology consultant is that knowledgeable when it comes to MPNs and seemed v focussed on just lowering the platelet number ( I’m around 520) and seem to have been at this level for several years. He had wanted me to go on hydroxycarbamide straight away - tho it seemed to be because I’m approaching 60 rather than anything else.
It just seemed odd to me that it seemed to be triggered by the stress I felt following my diagnosis
Hunter is a wealth of information. I can’t tolerate when my platelets are above 450. I’m lethargic. Maybe 520 although not really high is too high for you.
The older protocol is that age>60 = high risk. Some docs are using the newer protocol of age>65. Personally I think we all age differently and we need an individual appraisal of how our body has aged. We also need an individualized treatment plan for the unique way our MPN presents. Optimal MPN care can only be provided my a MPN Specialist. Most hematologists lack the KSAs to provide optimal MPN care due to how rare they are. It is worth doing whatever i takes to see a MPN Specialist.
Regarding the number of platelets that should be the target for cytoreduction, that is widely variable. There is no evidence that reducing platelets levels to "normal" reduces risk of thrombosis. In fact, 600 is the target many docs now use for cytoreduction.
Stress would be amongst a number of things that can increase thrombocytosis. Inflammation, injury, and illness can also increase platelet levels. So can iron deficiency and loss of blood. This is all well established. Fluctuation in platelet levels by as much as 100 can occur in a single day as a function of normal bodily responses.
As Wyebird notes, some people do find that they experience increased symptoms when their platelet levels go above a certain level. This is most likely because the same factors driving up the platelet levels are also driving the secondary/constitutional symptoms like fatigue. The overproduction of inflammatory cytokines is thought to have a lot to do with this. This is linked the the dysregulation of the JAK-STAT pathway as is the thrombocytosis.
If you are asymptomatic then I would suggest there is no rush to initiate cytoreduction. You always have to weigh the benefits with the risks/adverse effects. If/When you do decide it is time to initiate cytoreduction, you have more than one choice. Hydroxyurea and PEGylated Interferon are both considered first-line choices for treating ET. This decision is yours to make based on your treatment goals, risk tolerance, and preferences.
Yes, pins and needles in my hands and feet, along with the occasional burning of a toe and numbness of some fingers or my whole hand were my first symptoms of ET. They were intermittent and gradually increased during the day and night along with the occasional ocular migraine -which made me decide I should go to my GP.So much better since being put on Aspirin and Hydroxy.
Thank you, maybe I will end up having to go on Hydroxy soo her rather than later. I do occasionally get one or 2 white fingers - I’d forgotten about that ....
I still get that to this day, more profound during the cold weather regardless of platelet numbers and not just 2 fingers but both hands and feet occasionally, can be very painful at times. I discussed this with an Haematologist before who suggested Reynauds but when they tested my inflammatory markers as they wasn't raised it was dismissed. It is just something you learn to live with but dosen't stop me dreading the winter months. Tina.🤗
I get the tingling, ET JAK2.In my case, I have recently been diagnosed, ironically with another ’ET’…essential tremor. Was diagnosed after seeing my gp about my hands trembling. It’s also affecting my voice, in that I stammer a bit now. I thought it was my anxiety. It was the inner trembling feeling I get that made me think it was anxiety, especially as stress makes it worse. Having looked into this second ET I have, I realise the fairly constant tingling feeling I have in my arms and trunk area are due to this, not my MPN. It is worsened with stress. Essential tremor is a neurological condition.
The tingling in my hands and feet however are my MPN I think, and aren’t constant. It also feels slightly different, in that it is more like pins and needles.
I’m sorry that it’s affecting you so much, and agree with others on here about speaking to your haematologist about it. Sadly Hydroxy can bring it’s own side effects for some of us taking it, that you’ll have to take into consideration, should it be suggested.
I started getting tingling before my diagnosis of ET Jak2 in March 2020 but it has got worse and is fairly constant although, not so noticable when I'm active. I have been told it is not the mpn more than once and have been referred to neurology. Maybe I didn't describe it clearly as there always seems to be so many issues to discuss. Anyway, it has worsened, along with burning sensations that come and go, particularly in my legs. Months on and no sign of a neurology appointment so I contacted the GP who has arranged a test of my circulation. It will be interesting to see what they find.
It might be beneficial to ask your consultant to test your B12 levels as low B12 can cause the neurological symptoms you are experiencing, it is easily addressed, if your levels are very low it may be Pernicious anemia. Hope you get to the bottom of this soon.
Hi CB. I am ET Jak2 and have constant tingling in my feet even though I am on Hydroxy. This has just been upped an extra tablet per week plus on aspirin. I do get it in other parts of my body also, but not all the time, mostly my feet and it creeps up my legs to my knees. On last blood test my platelets were down to 435 and still my meds have been increased this week. I think I have just learned to live with it but at times, like Tico mentions, it becomes a bug bear so do not know whether you just learn to live with it. I was told at Guys last week it is because the platelets/cells become an irregular shape and therefore their journey through is not as smooth as they should be.
ET Jack2. I was very troubled by tingling and numbness in my feet arms and legs off and on. Some days very bad others not. I was referred to a neurologist who didn't find anything wrong and my MPN specialist told me this was not uncommon in MPNs, but could be hard to treat. He initially had me increase baby aspirin to 2 a day, which helped a lot. But later I started having nose bleeds so I had to go back to 1 aspirin a day and the numbness, tingling started again. I. have recently started Peg 45 mcg every other week and I am no longer having that problem. In my case, it seems that lowering my platelet count from 800 to around 650 (as of the last blood test) has made the difference.
I started getting tingling after I progressed from ET to MF earlier this year. I liken it to the feeling you get the following day after being stung by stinging nettles the previous day. It started in fingers and feet and has progressed further up the limbs. My haematologist didn't think it was MF and the UK score sheet of symptoms doesn't list it but I thought I'd seen it on a US symptoms list. I thought I'd get the GP to check for iron, B12 and blood glucose as we are not immune from other diseases! These were fine though the haematologist prescribed iron tablets 2x a week.
I used to have the tingling for a number of years but then it went away after going on Hydroxyurea. And keeping active throughout the day. Not sitting for long periods. Helps.
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