Mast Cell Disorders Forum - Do You think i could have this?

Emilyviolet

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Do You think i could have this?
07/23/12 at 17:42:25

[color=#0000ff][/color] Hi my name is Emily i have not been diagnosed and don't know if i will be cause no one knows much about anything where i am, but my symptoms are the following. i have been getting severe facial flushing for years and still have it. i am always hot although i don't sweat! my face burns so bad and it is triggered by heat. i have chronic hives and have been becoming allergic to nearly everything. i just had a reaction to benadryl and prilosec broke out in hives all over! i have about 4 drug allergies that i know of and tons of food allergies although this has been happening all within the past 3 years just getting worse. when i eat something i get bloating right away, and my ovaries hurt too. i went to 3 allergists the last one i just went to i found him online cause i wanted to go to the best allergist around and he was "the best" from where i am but he was a quack in my opinion, he wouldnt allergy test me cause he told me it wont proove anything. he said to just challenge myself and see what happens . i told him about mastcytosis and he just laughed and said you dont have that. he said they usually have brown lesions i do have freckles but not like lesions. ok here are my symptoms
tightness swelling on one side of my throat/neck after eating
severe flushing
facial rash
bloating
heat intolerance
sensitive to smells
hives
high blood pressure spikes
acid reflux
gum swelling
high wbc
multiple food allergies

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« Last Edit: 07/23/12 at 18:54:35 by Emilyviolet »

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Anaphylaxing

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Re: Do You think i could have this?
Reply #1 - 07/23/12 at 18:47:02

Welcome Emily. So sorry you are going through this. Wow, I can relate to almost all of your symptoms as they are what I am facing.

Ideally you should see a mast cell disease expert. Where do you live? Perhaps someone can suggest one close to you (though they are few and far between)

Are you taking any medications daily? Most of us take some combo of antihistamines (H1, H2) and mast cell stabilizers. Keys are finding triggers and avoiding them. Also premedicating before any procedures.
Heat is a big trigger for me also so planning ahead to stay cool helps.

Have you ever had your tryptase level checked?

I can so relate to the half throat swell. Mines usually my right half and I think it's a bit swollen all the time. Occasionally it's been the left. Such a distressing feeling.

Do you carry an Epipen? this would be important in the meantime while you get sorted out.

those are my initial ramblings. look forward to hearing more.

You will like this forum.

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Emilyviolet Tutor Offline I Love YaBB 2! Posts: 37	Re: Do You think i could have this? Reply #2 - 07/23/12 at 19:01:07 wow i actually want to cry right now to hear someone eles has the same symptoms as me, my tripase levels, is that with routine blood work? what kind of doctor do i see for this? i have recent blood work im going to go get it rigtht now and look for the tripase.
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Emilyviolet Tutor Offline I Love YaBB 2! Posts: 37	Re: Do You think i could have this? Reply #3 - 07/23/12 at 19:05:58 i didnt have that checked on my recent blood work.
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Emilyviolet Tutor Offline I Love YaBB 2! Posts: 37	Re: Do You think i could have this? Reply #4 - 07/23/12 at 19:07:14 im in longisland ny btw i do have epipens i just am afraid to ever have to use them , my blood pressure always spikes! its never low
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Emilyviolet Tutor Offline I Love YaBB 2! Posts: 37	Re: Do You think i could have this? Reply #5 - 07/23/12 at 20:13:09 is a trypase test just a blood test?
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Re: Do You think i could have this?
Reply #6 - 07/23/12 at 21:11:45

You are wise to be cautious if hypertensive and to head to the ER rather than use the epi providing you have the time to. High BP and Epi can have serious complications.

I just wrote you something on your other thread. We're getting topsy turvey. Yes tryptase is a blood test. If it is very high it can sometimes indicate mastocytosis and or anaphylaxis. If low, you are still left with a diagnostic conundrum.

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Re: Do You think i could have this?
Reply #7 - 07/23/12 at 21:14:04

You are not alone and with time you will find many like you on here. Anyone can order a tryptase test, my family doctor did, but those versed in it would be allergists and hematologists mostly. You need a complete work up by someone knowledgeable who knows what to do with you no matter or a local doc who's willing to consult with experts.

Most people on here see some improvement once they sort out triggers and get on the right meds not to say it's easy or that it's not an ongoing battle. Hang in there! You're doing a good job!

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Emilyviolet Tutor Offline I Love YaBB 2! Posts: 37	Re: Do You think i could have this? Reply #8 - 07/23/12 at 21:38:41 thank you so much you are very nice and helpful =)
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Re: Do You think i could have this?
Reply #9 - 07/23/12 at 23:36:38

Thanks for sharing your story. We all need each other and I've been helped by so many on here. It is so helpful to hear people's personal experiences.

You are totally on the right track by taking charge of your health. Just need to get you into see someone knowledgeable. If you can't go to Boston, is there a GP or similar person who is supportive and open minded that you would feel comfortable asking to seek out the expertise for you remotely?

I already forget have you ever been able to take a daily H1 and h2 blocker? I know you reacted to some but have you ever tried other ones?

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Emilyviolet Tutor Offline I Love YaBB 2! Posts: 37	Re: Do You think i could have this? Reply #10 - 07/24/12 at 09:38:22 i reacted to bennadryl, prilosec and zyrtec havent tried any others , i do have liquid claritin here but afraid to take it but eventually i will.
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Re: Do You think i could have this?
Reply #11 - 07/24/12 at 10:50:03

I know it's terrifying. Are you keeping a list of the inactive ingredients in the meds you take in case you're reacting to that and not the medicinal ingredient?

Compounding is an option thought often $$ where you can limit inactive ingredients

Yes you might need to try but also be safe, take lowest dose possible, try to find one without dyes or additives you know cause problems, don't be alone and sometimes I even sit in my car in the ER parkade if I'm worried

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Emilyviolet

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Re: Do You think i could have this?
Reply #12 - 07/24/12 at 14:13:30

yea the claritin is free of dyes so thats good. i broke out in hives again today, i am writting down everything i eat and do. seems heat is the trigger its mostly when i am sleeping i wake up with the hives cause i put my arm under my pillow and it generates heat. so im going to my allergist in a couple days gonna have him do that tryptase test on me . so what happens if its neg and what happens if its positive?

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PJP123

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Re: Do You think i could have this?
Reply #13 - 07/25/12 at 16:43:28

I have all the symptoms you have minus WBC count. I'm also on L.I. and have been to every specialist with my unending symptoms and every single doctor treats me like a hypochondriac. I know I'm not because of this forum. I tested positive for autoimmune chronic urticaria which is a secondary mast cell disease category. The doctor just kept saying you don't have mastocytosis. She never said that Chronic Urticaria does mean you have mast cell activation syndrome.

The swallowing thing is awful. I had it that my left side was worse. It might be that I sleep mostly on my left side and the reflux basically burns my esophogus at night.

My tryptase is 6 so when the doc tells you it's normal. It's not. You won't have mastocytosis at 6 but mast cell activation yes.

Singulair help greatly. I also take Zantac 75mg. and Zyrtec.

I have not been to Dr. Castells in Boston yet, but she agreed to read my test results because I have chronic urticaria.

If you find a compassionate doc on LI. I'ld love to hear about it.

I had one doc tell me when I went to him after his assoc. prescribed amoxicillon clauvenate (and I reacted with anaphalactic like symptoms) "You don't look like someone who can't breathe." Who says that? I felt like I was suffocating. I researched the amox-clav and the clav ingredient leads to degranulation of mast cells.

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Re: Do You think i could have this?
Reply #14 - 07/25/12 at 20:44:41

If tryptase in normal range, it is less likely that you have mastocytosis.

If high more suggestive of masto and they might want to do a BMB.

There are other mediators they can look for for MCAS, but most important thing is excluding other causes, getting on meds that help and eliminating triggers.

Watch for patterns with your cycle. Keep your room cool or get a fan. just ideas of things that worked for me

keep us posted

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