Very pleased to hear you don’t have leukemia but how frustrating not to know what’s happening after all this time. Hoping you get answers soon. Waitng around in limbo is just the worst thing.
Brenda
— Begin quote from “scott”
Maybe it was just some freak thing that happened to you, never to happen again.
— End quote
Except that it’s not a one off freak thing, it’s been ongoing ever since the anaphylaxis. I have symptoms of some sort almost every day. Some of them could be potentially be explained by migraine but wheezing? Persistently elevated tryptase?
I am seeing Dr Granot next week, apparently he has some ideas too. And he tells me he sometimes ‘shares patients’ with my immunologist.
From my Googling there are potential neurological causes/connections. The most likely for me would be Multiple Sclerosis given that I had optic neuritis. I know Dr Granot wants to do another MRI.
— Begin quote from “Brenda”
Very pleased to hear you don’t have leukemia but how frustrating not to know what’s happening after all this time. Hoping you get answers soon. Waitng around in limbo is just the worst thing.
Brenda
— End quote
Thanks Brenda, it absolutely is the worst. I was all primed for ‘an answer’ yesterday and was extremely deflated and frustrated to not only not get an answer but have the hematologist admit that she is stumped and will have to hand me back to the immunologist. She did say that it will be a loooong road ahead to getting a diagnosis, let alone prognosis and treatment. 