Hi Agnes. Please tell us more about your ET. Count etc. and what you are on as this is our only way of finding out about this terrible disorder.
I have had the burning for a few years but it has become intense in the last few months. It seems like the burning is from the knees to the toes and only in bed. I think it is there but as long as I am up and about I dont notice it. Also I have a strange pain down the front but more uncomfortable than pain. Enough to keep me from going back to sleep sometimes. I am tired a lot now but I think it is jet lag as NY is 5 hours behind England at least I am hoping.
After I get back to Texas I am going to have a second opinion from MDAnderson.
Do keep in touch with us as right now just Sasha, Barbara and myself are and it is very helpful for all of us. How do you feel? What dose and what kind medicine? and any info. you can tell us. When I see the DRS. at MDA I will inform everyone what is going on.
God bless
Maura