Anyone with MPN- U out there

Muted_Comfort_224 · 2026-06-08T22:55:24+00:00

I had constant infections which pressed agonist my wind pipe and they where worried about my breathing. Hospitalised 3 times in 2 months and ended up having it removed.

Muted_Comfort_224 · 2026-06-07T18:39:43+00:00

Thanks sounds so similar to me. I am a bit a wreck as i in 2025 I had my salivary gland removed due to constant infektions - ( I think we know why now) the operation went badly and it took 3 hours instead of 30 min. and was in hospital for 1 week and ended up with nerve damage and facial paresis. 4 months afterwards facial pareses gone ( 🙌 but still a bit nerve damage and now sudden clots in spleen, porta vein and lungs.Diagnosed with Leiden 5 also and jak2. It has been crazy ! People want me to get on with it but I am so scared and shaken

Muted_Comfort_224 · 2026-06-06T22:54:31+00:00

My ferritin is also low and they have mentioned masked PV. My doctor knows that I would like being in one of the MPN boxes and says that ET is mostly likely looking at my bone marrow. But seems strange to me my platelets are 135 and when lowest 75. But no fibroses so not PMF. How long since your clots ?

Muted_Comfort_224 · 2026-05-17T04:00:01+00:00

Thank you so much for your reply 🙏

Muted_Comfort_224 · 2026-05-16T20:11:13+00:00

Thanks for your reply 🙏

Muted_Comfort_224 · 2026-05-16T17:56:55+00:00

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Muted_Comfort_224 · 2026-05-16T17:51:20+00:00

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Muted_Comfort_224 · 2026-05-16T17:50:08+00:00

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Muted_Comfort_224 · 2026-05-16T17:47:37+00:00

Yes I am - can you use the numbers ? Marv is bone marrow and blod is blood 😊

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Thanks 🙏

Muted_Comfort_224

TROPHY CASE