Hi Louise
Welcome to our forum
I have a diagnosis of idiopathic angiodeama ( swelling , no idea why
Your daughter is doing incredibly well being at grad school with only just being diagnosed . As you look around the forum you will find lots of really interesting information . Dr castells is a leading doctor in mcad so i am very glad you have found her . Unf your experience of 10 years to diagnosis is not uncommon here ;-( but you are over that hurdle , it must be amazing
I am glad Rachel is doing so much better
Triggers remain an issue even after diagnosis and for many continue to be the best way to manage this illness . I am glad Rachel can exercise , but would urge caution to do so in a very protected manner as she may feel it later or the next day
Her high risk times will remain the same , just less
My naughty list reads much like rachels , she is definately not alone in that . I have gone from well to poorly to at the moment doing better , but not there yet
I am pre gastrocrom
Pots can run alongside mcad . i will leave it for others who ahve it , to say more
The chronic fatigue symdrome may stay but is more likely to dramatically change . A look at the symptoms list on the mastcystois society web page will give you a clue . Many , i would say all , of the symptoms are due to mcad , so as she does well and has varaiations , so will her fatigue .I have found if I rest at the point I know I need to I can sleep and recouperate . This feels hard to do in any schedule , but , it pays off
Sudden fatigue for me is a sign of trouble , in which I seek out and get away from a trigger and medicate .
hope to hear more from you soon , and Rachel if she would like
Josie