Mast Cell Disorders Forum

Riverwn

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NIH message
04/04/11 at 07:01:53

I talked with HJ today (Dr Wilsons nurse for the masto program). She says Dr Carter reviewed my files and thinks I am Idiopathic Anaphylaxis not Masto. (??? with a 43 tryptase??) I think that skin biopsy stained wrong really screwed me up. I am not imagining all my spots and rashes! LOL.. hey does that mean they arent real?? lmao (maybe Im officially cured lol).

They referred me to Dr Carter who is doing the IA program and HJ will talk to her this week and call me back. The program that Dr Wilson is doing has now been changed from a 48 hour study, to a longer term with followup study. So I cant do both studies, only 1. They said with the rate of my shocking episodes, the IA study is better for me..

Dr Lottenburg was ready to go forward with a BMB, and Im seriously thinking I am wasting time waiting on NIH, and should let Dr Lottenberg to it. I will wait to hear from HJ and Dr Carter, first.. Im just tired of waiting.

Hugs,
Ramona

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: NIH message Reply #1 - 04/04/11 at 08:37:05 Well...welcome to the IA club? Hmmm. Don't make any decisions until you hear from them.
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Josie Ex Member	Re: NIH message Reply #2 - 04/04/11 at 12:45:59 Hi Ramona . That makes zero sense . have they got you up to date tryptase results ? Many hugs sweets . How much will it cost to get you to Dr castells in Boston ??? I have you in my thoughts everyday Josie
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Lisa FORUM MODERATOR/ADVISOR Offline I am not a doctor. Posts: 1499 Volta Redonda, RJ Brazil	Re: NIH message Reply #3 - 04/04/11 at 15:26:22 Mona, Don't get upset, this may be a good thing instead. They will do the BMB with an IA study, and they may go over you even more so looking at it from this angle!!. So, don't feel like you're being passed over. Dr. Carter is TERRIFIC!! Don't worry about it. If you want her email, I've got it! Let me know!!! Hugs! Lisa
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Joan

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Re: NIH message
Reply #4 - 04/04/11 at 16:09:40

Hi Ramona,

The important thing is to get into see someone who is literate about mast cell disorders AND who is interested in your case. Once you get there, you can lay out all your concerns, which hopefully, she'll take seriously.

And if Lisa thinks Dr. Carter is great, then it's worth a try. As long as she sees the tryptase, your rashes, and does a BMB, that should produce a conclusive answer. I know you like Dr. Lottenberg, and I loved my first hematologist/oncologist, but the BMB wasn't handled properly or sent to the right place, and so they didn't get all the testing done on it that they wanted. They just didn't really understand. So, I had to do it over again last year. Yuck!

I have a question. I thought elevated tryptase was not seen in IA patients. Am I wrong on that?

Big hug! Hope you hear soon!

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Joan

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DeborahW, Founder

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Re: NIH messager
Reply #5 - 04/05/11 at 04:53:29

I've not heard of IA people having elevated tryptase. That is one of the ways that we get diagnosed, by not having elevated tryptase. Of course, only a bmb gives the final diagnosis. However, you can't depend on a bmb done just anywhere because they will probably analyze it incorrectly. You know that, Ramona, so don't jump the gun and have one done locally just to do it. You don't need a false negative or positive being sent to NIH because the local lab didn't do it properly.

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DeborahW, founder

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Riverwn

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Re: NIH message
Reply #6 - 04/05/11 at 08:38:32

Lisa and Debbie, Youre all right, sorry, Im usually a VERY positive thinker but sometimes I have to blow off some steam too! I agree, its probably a blessing in disguise. I wanted in that study more than the other one, I just want to make some progress. Im going to make a list and let Dr Lottenberg run the other tests that need done. Dr Carter has a GREAT reputation, She was head of both studies to begin with and let that other one go to do the IA study, so obviously she must think its more important than the first one. I will be patient and wait

I saw my primary today. Thats usually the basis for a bad day, but... it went really well.. its funny.. I did my hair this time, put on makeup and jewelry, dressed nicer and he took me seriously. he spent alot of time with me, more than much more than I thought he would, He took my requests seriously and asked me the right questons. I guess I know what to do now for a good visit! Im better now, just extremely tired...

Josie, I dont know, I know I have the results of 4 of 6 Tryptase levels done and all are above normal. Some slightly, others much higher.

Joan, what would I do without you?? You are gem and you keep me in line lol...I cant say thank you enough for your friendship

I seriously love all of you!
Ramona

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Joan

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Re: NIH message
Reply #7 - 04/05/11 at 09:08:08

You're getting so much closer. I know this wait seems endless, but it's going to be soon, and you'll get real answers!

How sad that make-up and jewelry and a nice hair-do are needed for a woman to be taken seriously and treated well in some parts of the medical world. If you'd had a mani and pedi and a bikini wax, he would have thought you were a genius! Cheesy

Sorry folks, I'm having a rough week.

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Joan

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Josie

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Re: NIH message
Reply #8 - 04/05/11 at 09:16:48

Hi Joan ,

Not at all , i had a similar experience with my GP here 2 weeks ago . Wink

I hope you pick up soon .
many hugs

Ramona Wink

hugs
I understand . I have been there waiting and waiting . I asked in case they don't have the relevant results there and that's why they have made , what seems , a curious decision . My next appointment has been out to october . I have spoken to the secetery , and hope to be appointed sooner . I will see him privetley if not .

I so want you on the right road with the right doctors Wink

I also want the day to come where you can medicate and get on with your day Wink

Jose xxxxxxxxxxxxxxxx

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Lisa

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Volta Redonda, RJ Brazil

Re: NIH message
Reply #9 - 04/05/11 at 13:23:32

Hey Mona, I'm glad that your doctor finally got his face fixed!! LOL!! I'm glad he was having a "good day" you needed him to!!

Now, about the NIH....I'M GOING TO DO AN ABOUT FACE!!!

Let Lottenberg have his way with you!! Let him do WHATEVER he's wanting to Mona AND GET ON WITH IT ALL!! You've been putzying about for the last 9 months and they've not moved any further with your sitaution. Do the BMB and GET OVER WITH IT!!! Then, have them do the processing of it, so it's done RIGHT!! Then, if the results come back positive, they'll know what to do with you from that point on!!! And even if they don't, they can still call you in for the IA study, and they'll redo the BMB and you will have either CONFIRMATION or CLARIFICATION but either way you look at it, you'll have ANSWERS!!!

So, you're a woman who is strong and can handle this exam - it's nothing, especially in comparison to childbirth!! It really isn't anything to be freaked out over. So give Lottenberg's office a call tomorrow morning and just tell them to go ahead and SET IT UP and get the stupid thing over and done with and MOVING!!

I'm so sick of your constantly running around in these endless circles that I am about to SCREAM for you!!! Shocked

Well, just a bit of friendly advice !! Wink

Love ya Mona Dear!!!

You honestly deserve BETTER than this my friend and I only want to see the torture over with!

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Riverwn

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Re: NIH message
Reply #10 - 04/06/11 at 13:27:33

Thanks Sweety. Ive gotten over my little temper tantrum and I'll be patient--for one more week, to see what NIH decides.. HJ asked me to give her that time, and I will, I owe her that much. If the decision doesnt go in my favor then I'll just proceed as planned with Dr Lottenberg

win, win yes??
Love you for thinking of me, npw take care of YOU!!
Hugs
Ramona

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