Hi everyone. I have ET jak -ve, diagnosed about 3 years ago. I just take aspirin. I also have neurofibromatosis type 1, with many serious complications.
I know my platelets have fallen slightly to 1100 from 1500, but I have been noticing some changes. I'm becoming increasingly breathless, and my heart skips beats to the point I feel dizzy. I also have burning toes, which I had at the beginning, but after taking the aspirin, that stopped. To have it come back is a concern. I'm also having trouble swallowing, which to be fair COULD be due to my nf, as I have a lump in my neck. I'll let you know how I get on tomorrow...
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lynnieb
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Went ok. I saw the nurse practitioner and she was lovely. She said she wants to hold off on more aggressive treatment for as long as possible, given that I have other complex issues. My platelets were 1100, but are stable. I mentioned that I may need surgery were blood loss would be an issue. Given that I'm already on aspirin, I was concerned; but she said I could be switched to Fragmin instead of the aspirin. No major issues though!
Glad that the nurse practitioner was able to be of help and listened to your concerns. I'm sorry that you have the neurofibromatosis to cope with as well. Very Kind Thoughts, Peter
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