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National Institutes of Health (Read 6930 times)
ValerieHunt326
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National Institutes of Health
04/06/12 at 08:43:33
 
After having the worst set back since starting this roller coaster with systemic Masto, my doctor has informed me that while he was at a seminar last month, he met with a doctor from the NIH who is the head of their masto research AND he has agreed to see me.  Not sure what this will mean but I am so excited. I am not sure how long it will take to get in to see him (I'm in Indiana and Maryland is a bit of a hike) but I am excited.  My poor husband (who I just married 3/26/12) had to witness what he called the worst thing in his life.  After returning from our wedding/honeymoon (New Orleans) on a Sunday night, I began swelling, itching, couldn't breath-same old thing but only worse.  My hives had become one large hive covering my entire body and then the blood blisters started all over my body. They are usually confined to my hands and wrists but my eyes were bleeding as were my ears.  My doctor immediately saw me Monday afternoon and after numerous visits and shots and of course the dreaded steroids, I am finally able to get out of bed today.  Hopefully when I get to the NIH, and hopefully become a test subject, I can provide all with additional information and hope.  Many blessings to all and hopefully one day, there will not be a need for this site!
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Joan
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Re: National Institutes of Health
Reply #1 - 04/06/12 at 09:52:57
 
Hi Valerie,

  OMG, so sorry you BOTH had to experience that!!  I hope you can get some help at NIH.  Are you on any stabilizing meds besides the steroids?  Do you have any idea what might have triggered you?

  Hope you're feeling better today.
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goldielove
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Re: National Institutes of Health
Reply #2 - 04/06/12 at 12:55:40
 
What a great place I was  a patient there when I first got sick and they were convinced I had a pheo I have never had such great care and understanding they were absolutly amazing will u actually be admitted too the hospital or will you just be seeing the Dr. I know they usually only see patients if they are doing a study so you got very lucky. My only complaint was after they did not find a pheo they kicked me out without exploring what else my problem could be they had so much documentation as I was actually admitted to the hospital for 3 days. I know and understand i was just there too rule in or rule out a pheo but its so frustrating that the symptoms of these disease so overlap that I wish they had just mentioned it too me so I could explore that option I did leave there terribly depressed as I felt I had no hope after finding out I did not have a pheo and now I am so thankful I did not have a pheo as its such a diff disease and i understand it usually comes back. I hope this Dr that u see will educate the endocronologist there that see PHEO patients in mast cell problems good luck let us know how it goes I am so sorry your honeymoon ended in your illness how sad and what a way too start your marraige but it will make you as a couple stronger ok take care and good luck
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goldielove
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Re: National Institutes of Health
Reply #3 - 04/06/12 at 12:59:17
 
I just re read your post I have too ask you this question, when I was a kid a long time ago lol I had horrible hives that would start only inbetween my fingers they would progress too large water blisters so large I could not use my hands at all this would last a couple of weeks of course there was not one Dr that at that time could figure out what the cause of this was. I had this at least three times a year but it was only on my hands, it seemed to stop when I turned about 15 and I never had it again I wonder if it could be related too my mast cell problems i have now and is this what you get?
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Julie M.
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Re: National Institutes of Health
Reply #4 - 04/06/12 at 14:35:21
 
Valerie,

What a terrible ordeal!  I'm so sorry you are having to go through such a difficult time.  I'm sending you every good wish that NIH holds the answer for you!!

Wising you good health,

Julie

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dm2011
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Re: National Institutes of Health
Reply #5 - 04/16/12 at 08:33:46
 
Sorry to hear you have had such a horrible time. do you know what the trigger was? From your trip, in your home, or food related?

What Dr. are you seeing in Indiana that refered you to NIH?

Denise
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Re: National Institutes of Health
Reply #6 - 04/16/12 at 09:10:06
 
SO sorry to hear this. Eerie that my downward spiral was right after my honeymoon too, but also after IV contrast.
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mommy2seanp
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Re: National Institutes of Health
Reply #7 - 11/12/12 at 08:18:51
 
May  I ask which doctor at NIH you're seeing?

Thanks
Tina
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