I was diagnosed with essential thrombosis in 2019. I had a bloody Marrow biopsy. And came back positive for the Jack2 mutation. My platelet count has been hovering in the high 300s, 390 was my last count however, I’m having such bad symptoms such as hand and feet, swelling, itchy, skin, fatigue, and my hand, my right side and my foot on my right side are swollen and they keep falling asleep.
I went to my doctor and told her about my symptoms and that I’m in a lot of pain, especially at night. She told me that none of my symptoms have anything to do with my ET and that ET has no symptoms. .
she told me that none of my symptoms are connected to my in central thrombosis however, whenever I look up symptoms, it says that my itchy skin and my swelling and my hand, falling asleep and my foot, falling asleep and being swollenp are all related to my essential frontalis. Do you think I should see another doctor? It’s just seems like she spends 10 minutes with me. Check my spleen and says I’m fine yet. I have all these bizarre symptoms. I’m very confused. I would love some advice I guess maybe I should see another doctor, she she supposed to be leading doctors for MPs
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Yes see another doctor for 2nd opinion, would do no harm. My hematologists have been fab thankfully and they are not mpn specialists. Things I didn't even think were symptoms they were able to tell me that they in fact were. ET 100% has symptoms. Not everyone gets them yes but a lot of people do.
What you list is most certainly symptoms related to ET. As the others have stated, you need to see a MPN Specialist who is familiar with how ET presents and how to treat it. Here is a list. mpnforum.com/tsr-the-list/
have you ever been checked for vitamin/ mineral deficiencies- just to rule these out?
If not, might be worth asking the gp for this. I suggest vit D, B12, folate, iron levels, thyroid panel, as a basic, plus anything else your gp can offer.
If the GP says it isn’t ET, then surely they have a duty to try and find out what’s causing your symptoms , so push for further testing.
Your GP isn't going to be able to offer too much on ET. I only got the diagnosis after my GP was curious about all my symptoms and sent me on an escalating series of tests.I would get in touch with your MSN care team or as Hunter5582 listing.
Sorry to hear you are experiencing these issues. I initially saw a doctor who said my bone pain was not related to my ET! I felt totally dismissed, and was able to see an MPN specialist, thank goodness. These diseases are so rare, that a non-specialist may only see a handful of patients in a career.
Pain, itching and fatigue are well-documented symptoms of MPN's. If feasible, do see a specialist, who wants you to have the best life possible, and is willing to listen and work with you. This disease is a long haul, so finding a skilled clinician is so very important.
Hello, the same thing happened to me! My right hand and right foot are swelling up and my skin is burning and itching. My hemotologist dismissed me in 10 minutes telling me it had. nothing to do with ET. So upsetting!
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