I had my appointment today with this Lady CFS specialist at Kidderminster hosp. Dr L, was very good and was extremely thorough.
I was with her for about an hour, she talked about CFS but examined me just about all over. I was impressed. She made me feel that someone was actually listening.
She said I had some muscle weakness but didn't know why. She looked at my Adrenal stress profile test and said she wasn't familiar with it as NHS don't do that one, but she has agreed to send me for a ACTH test at Worcester Hosp. So I am very pleased to be getting that done.
I am to have a test for celiac (I tried going GF, it didn't help) plus the useless TSH. I have got to have a stool sample done because of previously having Helicobacter many years ago.
They did my BP while I lay down and then again on standing. Of course it didn't drop when I stood up while I was there, it wouldn't would it!! This is often a problem when I have been sat for a while at home.
I still have to say I could tell she didn't really associate Hypo and the possibility of low adrenals could be my problem. She talked as if CFS as an illness in its own right and not a symptom of any underlying health problems. (I want all doctors to look at the recent Scottish parliament debate)
I agreed to meet with the CFS team and learn how to manage my pain and fatigue.( I bloody well don't want to) We have to play ball I suppose. I do "pace myself" now I have to! She said if my ACTH test showed nothing wrong and if I didn't show any improvement after meeting the CFS team, she might see me again.
On the whole I am pleased with how the appointment went.
Anyone had an ACTH test? what did it show? Is it done at an out patient clinic?
Thanks for reading.