anaphylaxing

serbo all foods seem to make me flush and itch too just thought I'd share

I get random intermittent chest pain of various types too

Good luck and let us know how it goes!!!

I'm only eating five foods right now trying to sort out my MCAD triggers. When it gets triggered, my POTS get worse too.

oh those rates are horrible I'm so sorry. How did it all start for you?

thanks for sharing the video!

yipeeeeeeee

I'm negative for everything too but still be treated for it with a positive response. Many of us fall into this category. In my opinion they just haven't sorted out the proper diagnostic criteria or figured out what to call "us" but "we" still need treatment

SO happy there's some progress Maiysa!!

Interesting Rama! Glad it's improving!

Naomi you could definitely still have mast cell issues without flushing

Have you checked out the mast cell disease forum? Even if you test negative to everything you could still have it if you respond positively to the meds. It's an evolving area research wise so not a great deal is known yet, so they're treating people based on symptoms in many cases. Would your family doc work with the Boston doc?

IgE would be a marker of regular allergies

Prostaglandin D2 of mast cell disease

but you can be negative to all and still have it (like me) which is the realm of MCAS/D vs idiopathic anaphylaxis

Katie raises a good point, a good allergist will want you to be tested for things that can masquerade like mast cell disease including complement deficiencies. Mine were normal.

The docs are definitely willing to work remotely with your family doc

Good luck!

So sorry to hear about your situation Naomi. Where are you located Naomi? Maybe we can help?

You should get a serum tryptase and urine N-methylhistamine and prostaglandin D2, blood IgE levels and CBC as a start. Maybe allergy testing too, though you've probably had that.

Can you find an open minded family doc who would work with one of the mast cell docs? That's what lots do.

Have you tried antihistamines to see if they help?

Worked out in a gym 6-7 times a week, 3-4 times a week with an athlete trainer for the months leading up to my illness. Also running, aerobics, Irish dance, horseback riding. If I didn't work out I would get grumpy

You name it. Now can barely walk. Miss it desperately

Wow that's awesome I am SO happy for you and it gives me some hope.

And, wow, Julie, WAY TO GO on the running and exercise! I hope I can get back to normal, then maybe we can go for a run together!! Tho even when I was healthy I ran uber slow, but I just LOOOVED exercise

I get them too but think moreso related to my MCAS.

it's good they hurt (in a way) because cancerous nodes are painless and we don't want that!

IF SO, have you been worked up for mast cell disease?

If not, just wanted to put it out there that you should as there is so much overlap and association between them, I would hate for someone to be grumbling along unrecognized.

If you're curious, you can checkout the mast cell disease forum that has some more info

http://mastcelldisorders.wallack.us/yabb/YaBB.pl

or the mastocytosis society website

http://www.tmsforacure.org/welcome.php

my random late night thought!

Yep they diagnosed me with that. It's a nice way of saying your anxious. I ignored them because I KNOW that's now what I'm feeling.

MAN do they ever like to use anxiety as a catch all.

So glad you found something that helps!! I was getting that for awhile but stopped eating breakfast and no longer have it. But maybe it was just carbs!!

Thanks for being kind enough to share with us

Ana

Claire, glad you're getting a good work up. Hope you get helpful results!

Are you okay??

Thanks for sharing! Keep us posted! Good luck!

they usually tell me I'm just anxious

That is so sad about your Mom, Carol, I am so sad to read it. It must be So hard to lose your Mom. Glad you're getting on a treatment plan and looking for answers.

Oooh I want to try it I'm convinced I'm hypovolemic but whenever I get the sickest and most tachy they've refused to give me fluids, so strange, usually they throw fluids at everything. I'd think it's because they're worried I'd react to it, but it's not that because most don't believe I'm actually having reactions

Oops, I vented sorry

You could be having steroid withdrawal symptoms (adrenal insufficiency) what is your heart rate? Did you taper off or just cold turkey? If in doubt go and see your doctor or go to ER you might need to do a slow taper off florinef

My symptoms started after I lost 10 lbs. Wasn't trying to lose it though so loss might've been related