Dreaming of a future

Good luck! Great news for sure!

im so glad to hear you are doing great but just be Beaware that after time in many, their bodies adjust to the Florinef and hence it can stop working.. hence why my specialist wont put my dose up.

Ive spoken to quite a few that it stopped helping for that reason after 8mths-1 year). You may want to consider for this reason if you current dose is working great, to stay on that dose so you have ley way to increase it if your body does end up adapting to that amount.

At least no matter what your future holds, you now have some answers and know that low blood volume is playing a big part in your illnesses (if Florinef ever stops working there are other treatment options out there for helping that low blood volume eg IV salines have gotten some back to full time work).

"I started new symptom: of Lymph node or throat pain, not sure what is hurting but is very mild and manageable. "

consider if you have gotten that new symptom due to being able to do more due to being on the Florinef. Sometimes one can have such bad OI that one isnt triggering the ME off as much due to the OI limiting how much one can do. You possibly have fixed one big symptom of ME, the OI but still may in fact have ME which now could show itself (due to the doing more) in other ways. That new symptom could be a warning sign to slow down.
Take things slow and give yourself time to work out exactly how your body is now in response to doing things, take care.

(sorry my post is so dismal.. I just would hate you to crash in many other ways ME wise now that you have your main symptom before sorted out).

In my case too the Florinef has made so much difference that I even considered going back to part time study again (but since found out my brain wouldnt be able to handle it)

I'm thinkin I might ask Dr. K to add some Florinef to my plan... Worth a try anyhow... Have read a lot about it for years...just never tried it...and have BP of a nearly dead person... 78/60 TY for writing about this...