Jump to content

Question For


Recommended Posts

Is it an endocrinologist that I would see for MCAD? I've been feeling a bit better.

I started zyrtec TWICE a day again and zantac, which I haven't taken for many, many, months. It's not that I have any stomach issues, it's just that I read about histamine in the stomach, so I started it.

As you may or may not remember, Bev at Dr. Grubb's office said it sounded like I might have it. Then I went to a dermatologist for him to look at the spots on my back and he blew me off completely. Wouldn't even do a scraping.

I don't get hives or reactions to anything. No flushing either. But the treatment seems to help. Just wish I could get a yes or no answer.

Thanks

Link to comment
Share on other sites

So happy you are not giving up <_< !!! Like everything else you've been through, getting a DX for MCAD won't be easy :) . The World Health Organization is currently meeting to hammer out uniform diagnostic criteria. Hopefully, once that's done, more allergists will be knowledgeable about this.

I would recommend that you see an allergist. Go prepared with (or send it ahead of time) some of the studies linking POTS and MCAD. Tell him/her that Dr. Grubb's nurse, who only deals with autonomic patients, suggested you investigate this. Tell the allergist that you've seen a great decrease in your symptoms when you are on H-1's and H-2's. Ask WHY? Tell them how you feel without the meds, and on the meds. See what testing they propose. At the very least, they can easily order a serum tryptase blood test to rule out mastocytosis.

Where do you live, which state? You may have a masto researcher nearby. I live in GA, but travelled to Boston to ask those same questions. I was also getting anaphylaxis after they had ruled out any allergies. Scary....

Go to The Mastocytosis Society's website to learn more www.tmsforacure.org

Big Hugs-

Julie

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...