Hi I have ET and PMF and have just in the last few days been experiencing an odd sensation in my upper arm. A little like I've been thumped but also a bit like you feel when you've had the strap round your arm too tight when they take your blood. Tingling sensation is in my hand down the side that leads down to my little finger. Is this familiar to anyone? I'm not very symptomatic in most other ways.
Thanks
There are a number of symptoms we get with MPNs similar to what you describe. These include paresthesia (pins and needles) and microvascular symptoms similar to erythromelalgia (burning-throbbing-pain swelling in extremities).
There can small be small thrombotic events that are a risk. Note that a thrombotic event in the arm would likely feel different than something like paresthesia or a microvascular symptom. healthline.com/health/blood... .
While this is likely just one of the typical MPN symptoms many of us experience, it is something to review with your treatment team. Be sure to mention it even if it is transient. If the symptom persists or gets worse then seek care sooner rather than later.
I have ET and some of my main symptoms were numbness and tingling (along with burning in my fingers and toes)- especially in left hand/arm initially (i described the tingling like I'd banged my 'funny bone'- but it lasted longer and recurred). I also sometimes get 'pinching'/tightening sensations in my limbs, though for me those are usually short/transient. Going on aspirin reduced my microvascular symptoms a lot. But it would be good to know the signs of clots/heart attack etc too (just to be able to distinguish from a more serious event), and def mention to your doctor.
Yes it does feel like the “funny bone” sensation sometimes! It seems it’s not just me then. I did think I’d ring my haem. My Gp is very good but knows his limits and would probably just get in touch with them anyway. I’ll call Mon.
When I was initially diagnosed with PV (with elevated platelets), i had been having the tight feeling in my upper left arm that you are describing as well. It was hard to explain it to anyone. Within 1 month of diagnosis, I was also diagnosed with atrial fibrillation and I had to start some medications for that. I stopped taking the aspirin I had been taking for the PV and started taking an anticoagulant in its place since it was strongly recommended for the atrial fibrillation. Anyway, since I started the AF meds I have no longer experienced the tight feeling in my upper left arm. The AF came on very suddenly for me and I had been having the tight feeling in the upper arm for some months before my 1st episode so wondering if the resolution had something to do with moving from aspirin to the anticoagulant? I don’t know. I also had erythromelalgia which was helped by the aspirin and continues to be helped by the anticoagulant. As well, I have strange tingling feelings in my arms and hands on a regular basis. I can’t remember what it feels like anymore not to have them!Not sure what to suggest for you other than bringing it up with your doctor, but thought I’d share my experience.
Thank you for sharing. x
Hi, had an original diagnosis of ET 2016 with a secondary diagnosis of PV, a few years later. Around 2019, I started having vision symptoms as well as tingling in fingers and toes; burning sensation in toes; numbness in hands and arms, and sometimes legs. This was as platelet levels continued to rise as well as my hematocrit levels with the PV. As I've been reading others' symptoms on this site, it seems we all share similar experiences to some degree? I recently started on Hydrea, but am doing this at my pace...I do not take 500mg/day. I do not recommend that any one else go against their hematologists or oncologists directions, as this is my choice. I was recently in the hospital for a day procedure, and platelet levels had dropped from 1200+ to 734, in about a 6 week time. An acceptable win for me! Platelet levels do bounce around, so as I continue with the Hydrea, we'll see what the next CBC has to say.
I'm not on any meds but have just taken some aspirin to see if it helps. As the feeling is intermittent it's a bit earlier to tell but so far I haven't felt the pain since taking it...
I've had versions of the tingling you describe. I'm ET jak2. It went away with 1000mg/day of HU but side effects were terrible, returned with 500mg and went away again with something in between.
Hopefully I won't need any meds for a while. Hope your side effects settle soon.
Could it be a trapped nerve in your neck? I was sent to physio with tingling and pain down an arm and into my right hand - given exercises - they worked then and still do each time these sensations return. Have had MPN (ET) and MDS for over 20 years.
PV at a young age
Hydroxy on the rise
shoulder pain
Sharp pain in arm after venesection
Agonizing pain in finger tips.
