Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> Support and Encouragement >> Ramona! What's happening with NIH and you? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1297963843 Message started by Sandi on 02/17/11 at 05:30:43

Title: Ramona! What's happening with NIH and you?
Post by Sandi on 02/17/11 at 05:30:43

Hi Ramona, I wasn't sure where to post this I could have pm'd you but in case anyone else is wondering too!!! Have you heard any more from the NIH and how are you feeling now that you have some of your meds back? I'm hoping you've been ambulance free for a few weeks now? :)

Title: Re: Ramona! What's happening with NIH and you?
Post by Riverwn on 02/21/11 at 08:25:48

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

Title: Re: Ramona! What's happening with NIH and you?
Post by jbean on 02/21/11 at 16:10:15

Ramona, I'm so sorry! I will pray for you!

Title: Re: Ramona! What's happening with NIH and you?
Post by Riverwn on 02/22/11 at 09:24:32

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

Title: Re: Ramona! What's happening with NIH and you?
Post by Sandi on 02/23/11 at 17:37:54

Maybe the NIH will just do your skin biopsies at this point!!! I'm so sorry you had another stinking shock, arghhhh NIH really needs to get you in, It would be nice if the snow was melted though wouldn't it :) I'm kinda like a superhero, my body temperature is as my DH puts it right below nuclear, maybe I could melt the way for you :) In all seriousness Ramona I hope this really gets moving asap for you.
Big Hugs,
Sandi

Title: Re: Ramona! What's happening with NIH and you?
Post by Riverwn on 02/23/11 at 19:19:11

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

Title: Re: Ramona! What's happening with NIH and you?
Post by jbean on 02/24/11 at 11:59:51

Hey Ramona,

Do you know if you are ckit mutation + or not? Ever had your prostaglandin levels tested?

Title: Re: Ramona! What's happening with NIH and you?
Post by Riverwn on 02/24/11 at 15:38:23

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.

Title: Re: Ramona! What's happening with NIH and you?
Post by Riverwn on 02/24/11 at 15:39:22

Ops forgot your hug LOL,
sweet dreams
Ramona