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I have JAK2 ET and MPN: Anyone else have these symptoms?

Posted by jak2mpnpositive @jak2mpnpositive, Mar 1, 2022

Hi all,
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?
Thank you.

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cindy7 | @cindy7 | Jun 16 10:59am
In reply to @jackiecarey "I myself noticed that my red red and white cells were increasing over time..When I brought..." + (show)
@jackiecarey

I myself noticed that my red red and white cells were increasing over time..When I brought it to the attention of my family doctor several times I was told several times it's dehydration. this continued until one day my lab work went over normal (I'm from the medical profession ) knew it wasn't dehydration and made an appointment with a hematologist. He knew immediately it was PV without the Jak2 although he did do the blood test and it was positive. I was told it's a rare orphan blood cancer and few doctors have had any experience with it. I was also told don't ask certain questions. I decided this hematologist isn't a good fit so then I went to MDAnderson where in the past I went for breast cancer. The hemotologist asked to do the jak2 and lab work again ,of course I said yes followed by a bone marrow..I'm on hydrox my doctor has made me a partner in my care which had made a huge difference for me..I have fatigue like many of you speak about and someone on this site said" it's our new normal.'"Which is so true and helped me accept my diagnosis..I only wonder if more people would be diagnosed before a clot hits the heart, brain or lung with the autopsy missing the root cause if more doctors were aware of these rare blood cancers. It's no joke and does affect our quality of life.. Delaying or missing the diagnosis is a huge misstep..

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My experience was a bit similar. The primary care provider poo-pooed my symptoms to fibromyalgia or depression. He offered me a prescription for antidepressants. I got up, walked out the door, and found a new doctor. He was probably doing the best he could with the knowledge he possessed, but I knew my body was screaming for help. Let’s take a minute out of our day to spread the word with thoughtful conversations.

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jackiecarey | @jackiecarey | Jun 17 10:40am

Ive been diagnosed with PV one of the MPN'S and I could tell something was wrong because my cell numbers were increasing over time and was told dehydration several times..Finally the numbers went over normal so I made an appointment with a hematologist..He knew without the Jak2 it was PV but did the Jak2 which was positive. My problem with this hematologist is when I asked questions if he didn't like it he'd say "don't ask questions like that" well that was the last visit with this guy. I'm with another Hematologist at another facility who wanted their own Jak2, bone marrow and lab work and who has made me a partner in my care. I wouldn't think twice about changing hematologist's if your not getting answers..Your symptoms sound troubling to me. I'm 76 you're a young mother, please consider getting into the weeds and find out what's going on....I'm from the medical profession and know how to navigate the system, they don't intimidate me....Don't except what you know is not right. Your inate self is almost always right. Good luck.....

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ontheverge | @ontheverge | Jun 19 5:40am
In reply to @markdi "I have been struggling with ET for 18 years now and have found heavy , really..." + (show)
@markdi

I have been struggling with ET for 18 years now and have found heavy , really heavy exercise helps a lot. I don’t know if it’s the endorphins or maybe my blood getting heavily circulated but it really helps but you have to be willing to go do a 50 mile bike ride when you feel like cr$p. I recently went from Hydrox to Pegasus and my platelets have gone from 700,000 to 450,000 but I feel worse than ever. Not sure why? I also have some very large bruise marks about the size of an orange where I inject myself in the side of the stomach that will not go away. The most concerning is my vision seems to be getting more blurry. It’s so hard to tell what is just from age as I am 68 and what might be from the drugs and disease.

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I too have found that heavy exercise really helps. I returned two weeks ago from an 9-day wilderness backpacking trip with four long days (10-, 11-, 12-, and 13-miles) of hiking between camps, and feel completely restored. I'm sleeping better and can work through the afternoon fatigue with an occasional short nap and by going out and tackling gardening chores in our southern heat and humidity. I've been on hydroxyurea intermittently for 18 months, finally getting platelets down to 469,000 taking 500mg daily.

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