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← Return to ET: untreated elevated platelets for over 13 years
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ET: untreated elevated platelets for over 13 years
Blood Cancers & Disorders | Last Active: Mar 26 11:22am | Replies (30)Comment receiving replies
Wow. I am glad you will have a new doctor. I think you were done wrong. I am ET triple negative. Diagnosed in 2025 but had slightly elevated platelets for about 10 years. My GPs spotted the problem. First sent to a hematologist in 2016. I think he mentioned ET but about all I remember is his saying don’t worry it’s not cancer. He said to just monitor my platelets and to come back if things changed. It took almost 10 years for my platelets to start to increase more rapidly. My new GP spotted the issue and recommended seeing a hematologist again. This guy diagnosed me. Did through workup including bone marrow and NGS. Did I have symptoms 10 years ago? Probably, but I had some trouble seeing them for anything other than aging. Even before my diagnosis it I just thought I was aging very rapidly. I had a host of symptoms I can now attribute to the disease: blurry vision, dry eyes, mouth, mucous membranes in general, hair loss, muscle cramps, dizziness, shortness of breath, tingling of feet, ankles, hands, joint and body pain, cognitive issues galore. I an now on HU for a year and most symptoms have improved. I added a number of medical specialists to my team to treat symptoms. For example sample I have a rheumatologist, a eye doctor who specializes in dry eye, a cardiologist, and gastroenterologist. I feel more equipped to meet this disease head on and get the most out of life. Insist on the NGS and bone marrow testing. It will help you understand your disease better. Also see an MPN specialist if you can.
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@eloise999 wow… I used to run a pharmacy before my symptoms and constant specialist appointments became too frequent that my health became my full time job. But when I was working, I was the youngest lead technician, but there was a running joke that while I wasn’t even 24, I was essentially 40. because of just how many symptoms and diagnosed conditions I had. Which then already included arthritis, nerve pain, and sciatica, among all of the others.
I also absolutely have all of the symptoms that you mentioned, and almost all of them either came about or got worse over the last 5-ish years. And, ironically, all of those same exact specialists. I also have SVT and mitral valve prolapse that was diagnosed two years before my platelets first showed out of range and I saw my first hematologist.
I also struggle with chronic muscle spasms that sometimes are so severe the muscle will get stuck, neck pain, nerve pain, joint pain in my knees and hands and my hips.
Before you started seeing the correct providers for and had a diagnosis, had you previously taken collagen peptides? For your connective tissues/Joint pain?
I know for a fact that I need a bone marrow biopsy and I definitely plan on insisting that my new oncologist do one as soon as possible. Especially if 90% of the symptoms that I’m having can be nearly eradicated with HU.