Erin - the specialist I saw yesterday said that he does not like the label Relapse-remit. He said it came, in the beginning, from the cancer era - like you can have a remission of the disease and then have it relapse. He said it gives false hope and doesnt fit this disease correctly.

He said even those who have a complete "remission" like me, it gives us false security, because the disease is still active and still destroying brain function, even if we can't see/feel/understand/find it. It also makes us feel that our disease may be more progressive if we don't "remit."

Of course he said it much clearer than I did. It makes sense... but doesn't make it easier.

I hope you feel better soon! Take advantage of the good days when you can. Wake up expecting a good day. If it turns out to be a bad day, pamper yourself. Sorry you are facing this.

What is s/s? the thing you say you can't stop blaming youtself for?

In my siggy, I have I CAN stop blaming myself for s/s. Like my fatigue. I used to think I was lazy and a bad housekeeper. I'd want to lie down and felt like I was bad for doing that all the time. There are some other things also, but that is the biggest thing. It feels good to have some validation to how I felt. I wasn't lazy, I wasn't not dependable...

I'm curious too... What exactly does the "s/s" mean, is it an abbreviation for two different words?

signs/symptoms - it is an abbreviation used in nursing... oops! DH yells at me when I use "nurse speak." Its kind like "internet speak." LOL

Ok, I understand this now. My dad is a nurse (CRNA actually...which is a Certified Registered Nurse Anesthetist) But, for some reason he hasnt used "nurse speak" around us much. But then, he's probably dumbing things down for me...even tho I've been taking classes for medical transcription.


I think I'll go back to feeling uncomfortably tingly and spinny now (please, tell the vertigo to stay away from me. It's icky) The spinnies could be being caused by hunger. I need food.

Hi Erin, I'm sorry you have been feeling all prickly and spinny You're off to eat and I think I'm off to a nap.