Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> MCAS or TMEP and Remission? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1350007211 Message started by PJP123 on 10/11/12 at 15:00:10

Title: MCAS or TMEP and Remission?
Post by PJP123 on 10/11/12 at 15:00:10

So just when I think you have it figured out, my symptoms change.

Questions:

1) Does anyone diagnosed with MCAS or TMEP not have anaphalaxis.

2) Does anyone with TMEP have a tryptase as low as 6.

3) Has anyone with MCAS or TMEP gone into remission? Meaning no symptoms and no medicine?

I have Oral Allergy Syndrome and autoimmune chronic urticaria. I now know what to not eat. I was having terrible internal tremors and thought it might be from H1 and H2 meds so I stopped them. I've been eating like I did 1 1/2 years ago. I'm so confused how this could just disappear.

Could it have just been menapause, chronic urticaria, tree nut allergy, grass allergy, birch allergy and the corresponding oral allergy triggers making me so sick? I was flushing, shortness of breath, fatigue and itchy. I got the diagnosis this week of Vasovagal Syncope so this accounts for the terrible fatigue.

Was this all just a coincidence of symptoms? Dr. Castells did agree to look over my files but still have not sent them.

Just wondering?

Title: Re: MCAS or TMEP and Remission?
Post by brigitte on 10/11/12 at 16:38:47

I have many of the same questions! As you know I have AU too. But what is oral allergy syndrome?

Title: Re: MCAS or TMEP and Remission?
Post by brigitte on 10/12/12 at 05:27:11

I looked up oral allergy syndrome. Interesting! I've never heard of that! I ALWAYS get these sores (not bleeding open sores) on the front of my tongue. I can feel it coming on for like a day. My tongue is very sensitive, then it gets kinda numb, then these rings will appear. Sometimes it is very painful and hard to talk, other times it is just annoying. Wonder of it could be te same thing? What are your symptoms from this? I read that it generally happens to people with hayfever. Do you also have hayfever? I used to have allergies to pollens, weeds etc as a child. But I outgrew them.

Title: Re: MCAS or TMEP and Remission?
Post by PJP123 on 10/12/12 at 10:06:19

I'm glad you looked up oral allergy yourself because I have such brain fog I couldn't explain it. I was in pre-syncope bad today.

So my symptoms for this are mouth sores and shortness of breath.

I never liked fruit. It must of been my bodies defense mechanism.

Title: Re: MCAS or TMEP and Remission?
Post by DeborahW, Founder on 12/30/12 at 07:13:37

This Topic was moved here from Symptoms by DeborahW, Founder.