Hi Sandi
Actually I went into shock again Friday nite--I guess I had been working up to it  and felt rotten the week before, so I wasnt posting much at all. This episode wasnt as severe as others I have had--I took 60 mg of "emergency" prednisone just before I called 911 and it sure helped!

Ive spoke with NIH 3 times in the last week. I have my skin biopsies but do not trust the results. I called them about sending the tissue samples directly to them. We are waiting for Dr Wilson to return this week--he was off on vacation last week.. and he will decide where to send the biopsies... I have sent most medical records to them and I have to fax the Dr referrel letter to them , then NIH will decide when I will go. Im excited.. I have some symptoms I really need help with, plus they gave me an OK to also apply for more than one research program. I want in the research study trying Gleevac (Imtrib). I'll let you know what happens
Hugs,
Ramona

Thanks Jb, I certainly can use any prayers and i ill always include ALL of you in mine
Hugs and love,
Ramona

Thanks Hon, I do too.. I seem to get a handle on one symptom and another pops up.. gets discouraging but Im fighting it... Im so sorry for those terrible flushes you have.. it sucks so much to go through them.. listen think about upping a dosage there... flushing so near the surface means those mast cells are stirring around and you have to force them to quiet down--or go nuclear.. I know the feelinga and I hate it.. It always helps me to add or increase something and I become more stable. thats my problem now.. I ran out of some meds,, I should have pushed it but I waited and the mast cells woke up grrr, LOL.. Im medicating well from now on... Best wishes for you hon... fight em...
hugs and love,
Ramona

I dont know from testing but I know my prostaglandins are high--all the women in our family are.. hair on the chin that I hate LOL..Loud mouthed outspoken women.  we always chalked it up to being native american. On thanksgiving we laugh--the women are watching football and the men are doing dishes! lmao. I do need to have more testing done--and that is what Im counting on when I go to NIH... They will do the BMB and a bone density testing plus.