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Essential thrombocythemia

Blood Cancers & Disorders | Last Active: Mar 23 9:48am | Replies (64)

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@mjpm2406

I was misdiagnosed at the VA Hospital with ET in December of 2018. Didn't believe a word the VA Hematologis told me ao I went to Sloan and had a bone marrow aspiration and molecular panel done. The final diagnosis is MDS/MPN-RS-T. Also JAK2, SRSF2 and SFB31 positive. I've been on Hydrea and 81 mg aspirin since January 2019. No problems with the Hydrea or the aspirin.

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Replies to "I was misdiagnosed at the VA Hospital with ET in December of 2018. Didn't believe a..."

I realize I’m replying to myself but I hope everyone can see this. I’m starting to have problems with neuropathy of my feet so the doctor put me on Gabapentin which is for neuropathy pain. The problem for me is sleeping. When I’m in bed and my legs touch it sets my nerves off off and I experience cramps and tingling. Sometimes the tingling is so bad I can “hear” my nerves complaining. Like white noise in my brain. Just annoying. When it starts I have to sleep on a recliner. Within the last month I’ve started having back pain. I have MDS/MPN-RS-T and one of the diseases in that overlap disease is myelofibrosis. I’m heading off to an Orthopaedic doctor for X-rays to determine if my back pain is coming from “weakened bones” or is muscular in nature. It never stops does it?