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I have JAK2 ET and MPN: Anyone else have these symptoms?
Blood Cancers & Disorders | Last Active: Jun 19 5:40am | Replies (63)Comment receiving replies
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?
Replies to "Thank you for your response. If I’ve been sitting without much movement, I can wake up..."
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.
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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.