Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Introduction and hello http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1389127458 Message started by Brassy on 01/07/14 at 08:44:18

Title: Introduction and hello
Post by Brassy on 01/07/14 at 08:44:18

My name is Brassy and I am brand new to the board. I only found out about Idiopathic Anaphylaxis and Mast Cell Activation Disorder from meeting a woman who had all the same symptoms I do (at Sansum Clinic).

My doctors gave up a long time ago trying to figure out what I have Photosensitive (but test negative for Lupus), Fibromyalgia, Endometreosis, Heat Induced Asthma and Severe life threatening anaphylaxis to cigarette residue and to cigarette smokers.

I have been tested for everything including M.S. I went to UCLA and they told me to just avoid cigarette residue and the sun.

I tested positive for HTLVIII in the 1990's. I had Mono at age 16 and it morphed into an unknown virus that has never been fully identified.

It is thought that I have Epstein Barr but all my doctor has said is "We treat the symptoms as their is no cure, so it's doesn't matter what you have". I struggle with debilitating pain (back, neck, down right leg, bottom of feet, hands), strange swelling of legs at times (bilateral or monolateral), swollen glands, feeling of burning up all the time, prickling heat feeling on face in the sun or under bright lights, tachycardia, and a whole host of other random things like blurred vision at times and ringing in my ears. I am a lifetime non smoker and a non drinker. No recreational drugs, just the prescriptions the doctors prescribe. My home life is happy. Wonderful husband and grown daughter who is 27. No psychological issues at all.

I would love to educate myself in everything there is to know. Knowledge is power.

Oh and I have been turned down for Disability, more times than I can count. Even though I am mostly home bound.

Thank you,

Brassy

Title: Re: Introduction and hello
Post by Spartako on 01/07/14 at 16:34:38

Any tests for MCAS done?

According to Dr. Larry Afrin, MD, a professor at the University of South Carolina who is one of the world’s experts on MCAS, testing should consist of the following:

1.Complete blood cell count with manual differential, comprehensive metabolic panel, and a serum magnesium level (these are usually part of a doctor’s evaluation for a patient presenting with any type of chronic illness). Coagulation studies and serum immunoglobulin levels may need to be done depending on presenting symptoms.
2.Blood tests consisting of serum tryptase and plasma histamine levels. If the tryptase is greater than 20 ng/mL, then a patient must be evaluated for systemic mastocytosis. In MCAS the tryptase, although often elevated, is almost always less than 20 mg/dL.
3.Plasma prostaglandin D2 (PGD2) and heparin levels.
4.Chilled 24 hour urine sample for PGD2 and methylhistamine.

Title: Re: Introduction and hello
Post by DeborahW, Founder on 01/10/14 at 14:54:33

Hi Brassy and welcome! I have a lot of helpful posts for you in "Tips for identifying triggers and how to get better" category. So, make sure to take a look at them, especially as it sounds like you and I both have IA. So, my situations might be similar to yours! Feel free to ask me questions. I'm happy to help.