Hematology appointment

[Tingle20]

I finally saw a hematologist yesterday. I have had blood work 3 times since December. All showing my platelets in the 700-730 range. Everything else is normal range. My platelets were 798 yesterday. I had a bone marrow biopsy in the year 2000 and was told to take aspirin. I thought it was because I was on birth control and smoked. Shortly after I got pregnant. So stopped everything. Haven’t been told anymore about high platelets till now. 20 years later. My dr is doing all kinds of testing on my blood and I have to call him Tuesday for results. He is checking for MPNs and other stuff. Of course I’m concerned. I started taking aspirin yesterday. Guess I’ll find out next week what’s going on

[hunter5582]

Well that is pretty appalling. It sounds like you were diagnosed back in 2000, but no one told you. I was diagnosed with ET in the early 1990s. My docs told me right away what the diagnosis was. It sounds like you have a relatively indolent form of a MPN (assuming that is what it is). Hope you get clarity soon.

[Tingle20 in reply to hunter5582]

I have symptoms now that I think are related to the elevated platelets. I am dizzy , have a headache and major brain fog on a lot of days. Seems like I’ve had a headache for a year now. Being treated for migraines but this isn’t a migraine.

[hunter5582 in reply to Tingle20]

It is very important to consult with a MPN Specialist. Most docs, even hematologists, are not familiar with MPNs due to their rarity. Here is a list.

mpnforum.com/list-hem./

It is worth doing whatever it takes to see a MPN-expert doc.

FYI - the issue with MPN symptoms is more complex than the absolute number of platelets. It is more about how your blood cells behave than how many platelets there are. It is also about the elevation in inflammatory cytokines that results from deregulation of the JAK-STAT pathway. Once you have the diagnosis clarified, you will have the opportunity to learn all about this if a MPN is confirmed.

The Voices of MPN Website will be a great place to start, if needed. There are other excellent resources as well. Please stay in touch and let us know what you find out.