Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  We've upgraded to YaBB 2!
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
New here, MCAD diagnosis (Read 5489 times)
Shaunamom
Rookie
*
Offline


I Love YaBB 2!
Posts: 1

New here, MCAD diagnosis
01/19/14 at 15:39:12
 
Hi - very happy to be on, woo hoo.

I'm 41, diagnosed with MCAD the end of last year. The first incident I can remember that would qualify as something related to MCAD was when I was 16 and had waxing and waning full body hives for about 8 months straight. I'd had a raging sinus infection for months during this time and in retrospect, I think it may have set me off.

My IgE levels were totally normal, however, so since there was no IgE elevation, they weren't allergies so we shouldn't worry about them. They'd pass. Except they didn't until I figured out that if I stopped eating certain foods, they would stop. We informed the doc; she said that had nothing to do with it because the foods had nothing in common (Now I know that they all had ingredients that pick up sulfite contamination during processing, which is one of my triggers).

I slowly got sicker over the years, but once those hives stopped, I had almost no signs that I would have taken as an allergic reaction except to medications. Even now, unless it's really bad, my reactions are a bit weird. I have mental confusion, headaches, brain fog, bone pain, fatigue, joint pain, anxiety, random hot flashes and feeling freezing cold but unable to warm up, gut and bowel issues, tons of over-use injuries due to inflammation.

I've been to tons of specialists over the years and they almost all had one of three responses: 'here's a pill to take care of it,' 'it'll pass, don't worry about it,' or 'it's all in your head, stop worry about your health so much.'

My last doctor was great, but knew nothing about mast cell disorders so he just helped when he could and had on my chart 'no medication to be prescribed unless there is a life threatening emergency.' Because meds and me were definitely not best buds.

It's only in the last few years, after I was diagnosed with celiac disease and went gluten free, that things got much worse and I had trouble with breathing. However, I had vocal cord dysfunction, so because I tested negative for allergies, all breathing issues were considered because of that. My diet dropped down to a handful of foods and I started reacting to a huge number of smells, but nobody could figure out why.  

Finally a few months ago, I got a virus that triggered things even more and I started getting itching skin and reacting constantly, all the time, so I went back to my doctor for help (after having pretty much given up on that, for the most part). I lucked out and a new specialist had moved to my area who had at least heard of mast cell issues and knew what tests to do, and I was diagnosed with a mast cell activation disorder, but not mastocytosis.

I'm finding it really interesting how looking back on my life, I can see all these things that were mast cells, but every doctor I ever met, and myself, thought of other things for them. OTC meds always gave me crazy 'side effects,' so I rarely used them, so I was sensitive. If I had alcohol, I got drunk really, really fast (pretty sure it was a reaction, instead, because I act kind of drunk when it happens). I hated using certain medications that 'made me feel weird,' so I was just picky. I was always getting sick and recovered slower and slower, so I must not sleep enough or didn't eat healthy enough. I was anti-social because if I was in a crowd for too long, I started getting headaches and anxiety and wanted to leave (HUGE perfume triggers for me).

It's like there's been this subtext to my life that I was completely unaware of, you know?

One of the things I really want to learn more about is atypical anaphylaxis, because I suspect I may experience this and have just been very, very lucky.

When I drank a few glasses of wine (before I knew sulfites were an issue), I ended up vomiting all night long, dizzy, confused and pretty much incoherent, and stayed dizzy and sick and confused for over a week.

When I get gluten contamination in food, in about 1-2 minutes I get instant vertigo/weakness, complete confusion/difficulty understanding speech, seriously slurred speech, and I'm sick for weeks afterward.

I have no idea if I have had itching or gastro issues or BP drop or anything else at those times, because I've never been looking for it, and was too miserable to pay attention. But I wonder now if these were possible atypical anaphylaxis.

I have two great kids, one of which (my daughter) looks like she has mast cell activation issues, too.

My ex is a great guy in a lot of ways, loves his kids, but he's horrible about the mast cell stuff. Before I was diagnosed, he didn't believe I could actually have problems with scents, because that was ridiculous and didn't make any sense, so it must all be in my head. A month before I was diagnosed (after we separated), he was trying to get to me go get 'psychological help' because I obviously had a problem and was just acting out to get attention.

After I was diagnosed, he just doesn't want to hear about any of it, because then he has to own up to some pretty crummy things he did, like trying to 'prove' to me that it was all in my head (secretly exposed me to one of my triggers, for example).  

This has made my daughter's diagnosis more difficult, because he can't let go of the idea that all my reactions are in my head, and this must have 'affected our daughter.' So he likes diagnoses that suggest my daughter's problems are in HER head, and wants second opinions on the diagnosis of a mast cell disorder. Undecided

All in all, it's been a very emotionally trying time with this disorder. However, I have really learned who my friends are, and aside from the ex, I have really supportive family, and I feel like if I never got diagnosed, we never would have looked down this path for my daughter, so I'm SO grateful for that.

Looking forward to meeting others in the same boat!
Back to top
 
 
IP Logged
 
kesasur
Tutor
**
Offline


I Love YaBB 2!
Posts: 64

Re: New here, MCAD diagnosis
Reply #1 - 01/20/14 at 04:55:29
 
Hello and welcome.
You could have written my story!  I'm Kelley and 38; recently diagnosed after 14 years of strong symptoms and probably many years earlier of more "mild" coming and going- oh I have a sensitive stomach, or just sensitive to meds, or can't drink alcohol- oh well.   Shocked)
I hope you find encouragement, help, and information here!  
I also suspect my daughter is following my path... right now MDs think: allergies. But since MCAS can be triggered by allergies (or illness! or...or... or) I'm keeping an eye on her.
As a matter of fact, this AM she had a headache and felt very tired. She had a significant exposure to fragrance yesterday and ate a lot of chocolate.  I gave her extra zyrtec this AM. She has perked up a bit.  I think the med helped.

I'm glad you've sorted out who your friends are- I understand that too!  I hope that in time your ex will come to see what is happening, it is a hard disease for many to come to terms with- even us! never mind those watching us!

Kelley
Back to top
 
 
IP Logged
 
mrsmegorium
Rookie
*
Offline


Sickness ain't for sissies
:)
Posts: 11
Myrtle Creek, Oregon
Re: New here, MCAD diagnosis
Reply #2 - 03/09/14 at 10:54:45
 
I can really relate to your story.  Thanks for sharing
Back to top
 
 
IP Logged
 
Anaphylaxing
Guru
*****
Offline


Hang in there! You can
do it!
Posts: 836

Re: New here, MCAD diagnosis
Reply #3 - 03/10/14 at 20:12:09
 
Oh my gosh. Can't believe what similar paths we all take. I really hope you're improving now. Thank God for the internet so we can all find each other.

Scents are one of my biggest issues too and gosh there is a stigma, which makes no sense as our whole respiratory tract is lined with mast cells ready to explode.....

I get a lot of "atypical" reactions too. I heed them all as warnings that if I don't get away from the trigger or be careful they could lead to anaphylaxis---which I've unfortunately also had a few times.

Your daughter will be in such good hands with you to watch out for her. Who knows how much better we'd all be if our symptoms were recognized promptly.

Take care Smiley
Back to top
 
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print