I have JAK2 ET and MPN: Anyone else have these symptoms?
I've suffered for many years with this MPN disorder, but it seems not many others have the same symptoms, so I'l posting this to see if anyone else has similar symptoms.
First of all, it's important to note that I had lyme disease undiagnosed for 4 years. Right around the time I started to experience symptoms from Lyme disease, my platelets shot up. With that said, I am certain that this is when the JAK2 was triggered. However, it took my another 9 years to be diagnosed with JAK2, ET MPN. My platelets are currently around 890. I am 40 years old. With a recent pregnancy, my platelets went down into normal range and I felt AMAZING!
Symptoms that I experience: Very red (almost purple) feet when sitting too long. This is not comfortable.
Upon sitting too long at a desk, typically in front of a computer, if it's consistent for several weeks, I start to feel as though I am going to die. There is no other way to explain it. It's as if my blood is stagnet. It's VERY uncomfortable. The only way for me to feel better is with exercise and continued movement.
I've had a hematologist tell me my symptoms aren't related to my MPN and I've had one tell me they are. It's very frustrating.
Does anyone else have any similar symptoms?
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Welcome @jak2mpnpositive, allow me to tag other members like @claire39 @bluegrasspv2018 @jam5 @dwlowrance @levieta @lzimmerman @mpt77 @huronshores @markdi @stevehurlburt who have the JAK2 gene and either myeloproliferative neoplasms (MPN), essential thrombocytosis (ET) or both.
I'm glad that exercise and movement helps alleviate the purple feet and feeling of stagnant blood. But obviously you can't be in motion all the time. Does this also happen when you're lying down? How do you feel upon waking in the morning?
Thank you for your response. If I’ve been sitting without much movement, I can wake up with the cruddy symptoms. It can take a few days of movement before I start to feel better. Oddly, there does seem to be a correlation of feeling worse if I sit at a desk in front of a computer on a daily basis. I had to leave my previous career due to how uncomfortable My body was. And when I say uncomfortable please know I mean I could not find any comfort and felt like I was going to die.
Since I’m no longer at a desk daily, my symptoms have greatly improved, but still exist on some levels. Lying down definitely helps, buy as soon as my feet touch the ground in the morning, I typically feel the burning, pooling type sensation.
Would love to hear others stories!? And can anyone relate? Anyone else have Lyme disease trigger their jak2?
Good morning…….I have not commented on this forum for a while because I have bern dealing with a different kind of pain, sciatic nerve pain. If anyone out there has had it you know what I mean when I say I just had to shut down etc. I have ET and Mpn and while my legs have not discoloured I have trouble with circulation and numbness. I find a heating pad comforting. Sorry I can not say more as it is the waiting game for sure. I find that if you ask questions you do not really get answers so you try to figure it out yourself. Good luck to you in your journey
I am 67, CALR, onset 12 years ago, HU therapy three years. Platelets stable in 400s. My hands and feet get icy cold, then red and hot. This can be painful, and is especially bad in winter. I wear compression stockings. Keeping my hands and feet from getting cold with good slippers and hand warmers helps. I also have an elliptical machine I keep in front of my seat so that I can keep my legs moving while sitting. You can get ellipitcals to fit under your desk at work. I have heard many other ET patients complain about similar symptoms and a few said their hemos assumed it was circulation, but offered no suggestions. My GP is often a better source of help for troublesome side effects than the hemo. She looks only at blood levels, and asks about depression and pain. Never any mention of fatigue, dizziness, headaches, or circ problems, which are the main probs with ET.
Oh heck Yeah! Diagnosed with ET and Jak2 was just one of the ten markers I was confirmed to have. it Started with purple toes, went to black when my platelets jumped …Rhumatologist thought it was cryoglobulin, but playlets were above 800 despite taking Hydrea. Vascular Surgeon diagnosed a 40% blood lot so they did a stent, put me on blood thinners And had to cut off the Black(dead) skin. Laid me up for almost this past year! What we have is Rare and Rarer side effects….modern medicine has no solid research. They do not know, so use logic and research. Thick blood does Not move well and Any additional vascular issues just makes it worse. Had a cancer specialist examine me, said in 30 yrs he never saw this…then called me at home…excited he had found One other case…I asked, what was it…they never figured it out. These rare cancers are still a mystery and I go to some of the best Specialist @Mayo And MD Anderson. You are on your own here. But my suggestions are 1) get a vascular dr to do ct scans of your legs….look for Any issue. 40%/blockage for me is nothing, but requires stent due to other issues. (Hell I have a 60% blockage in my heart they just monitor). 2) take it seriously…you know what you feel like….it IS something….chase it and find anything Else in addition to platlets that may be causing it. Good Luck…be your Own advocate….
I’m waiting on my results for Jak2, CalR and MPL gene, curious do you take B12 injections, I keep asking my hematologist could injections cause all my high levels of platelets, WBC and ferritin.
Are you on any treatments for this disorder.
Hi, the Facebook group may be a good place to post because it has a lot of members. I don’t have those symptoms, however I have several family members with chronic Lyme and I suspect I have it as well but too chicken to get tested. Your symptoms could be from ET or Lyme. Lyme manifests in so many different ways. Sounds like you have circulation issue maybe neuropathy which is definitely part of ET. I’m sorry you had to quit your job because of this.
My husband had Lymes and Erlichiosis (another tick-borne disease) 12-15 years ago. In 2021 he was diagnosed with Jak2 MPN, or Primary Myelofibrosis.
We often wonder if the two are related. His hematologists can’t confirm this. I don’t know if there have been studies regarding this. In your case, how were they able to confirm the Lymes connection?
I’m happy to say that he has just passed day +100 post BMT and is doing very well. All the best to you as you continue through the process of recovery.
Wow! I’m so happy he’s doing well.
My connection is known via blood tests. I was very healthy, had the tick bite and 3 months later all of my blood tests changed. My platelets soured very high. My blood work prior to the tick bite was completely normal and more importantly, I felt healthy. Thank you for sharing your story.