← Return to Starting 17th year with ET. What's ahead?

Discussion

Starting 17th year with ET. What's ahead?

Blood Cancers & Disorders | Last Active: Jan 19 4:08pm | Replies (52)

Comment receiving replies
@1pearl

Hi Lori,
Yes, I had JAK test and negative. I think they ordered more tests that are not back yet as take more time. I do have an enlarged proximal phanangeal right ring finger joint and sternoclavical joint with no pain but deformed bone but never really determined cause but I have not had injuries or falls to cause them. I did have hand MRI saying to rule out inflammation/infection which was never done. I have negative rheumatoid factor from lab and no psoriasis. I might be able to get a new hand MRI to compare but Hydrea and aspirin is recommended for life now. Hand specialist I saw for first issue in 2023 was pretty useless and did know what I have from the MRI and wanted to do exploratory surgery which I declined. Difficult to get second opinion and rheumatologist did not know what it is either. Mostly frustrated appointments with docs I must say.

Jump to this post


Replies to "Hi Lori, Yes, I had JAK test and negative. I think they ordered more tests that..."

"Frustrated" is how lots of us feel when we develop complicated health issues.

Answers don't come easily.

You are doing everything right: Seeing a hematologist/oncologist, getting tests, and while awaiting further explanations, protecting yourself by taking HU and aspirin.

Having a blood issue you probably didn't even know was possible can make you feel really alone. In this forum, though, you're among friends. We've all been through it. We're here for you.

Was the rheumatoid factor testing part of the testing your doctor automatically did? I am waiting for my genetic testing results to confirm ET, but no one mentioned the rheumatoid factor. My mom had rheumatoid arthritis. She got it late in life and it was very severe. My symptoms fit ET diagnosis but I want to make sure there is not another problem lurking.