For Mack's Mom

[lorrie]

Funny that you mention Mast cells. An allergist I used to go to for allergy shots actually suspected Mastocytosis. He ordered 24 hour urines and bloodwork. Nothing was conclusive. I took Benadryl for awhile without much improvement. I still take one from time to time. It was several years ago that the allergist tested for Mastocytosis.

More recently, I went to Vanderbilt and the doctor thought my episodes could be triggered by MSG in foods. Testing was non conclusive once again. I carefully stayed away from MSG for over 6 months and was still having episodes.

I have also been tested for Porphyria by a urologist because I have blood in my urine often and at times it is a dark purple color. Those tests are non conclusive...surprise, surprise.

My POTS doctor says that more than likely I am suffering with POTS, NCS, Mastocytosis and Porphyria because my symptoms are so intense and so intermingled. He said testing for some of these disorders is difficult because the timing has to be just right to measure the chemicals, etc. that they are looking for.

Please let me know what you find out. Best of luck to you!!

[delphicdragon]

MSG is evil!!!

I have such severe episodes if I eat MSG. Ate Chinese beef skewers (no idea what they are called) as was SO nauseous, I thought the skewers went bad, but no one else felt sick. It took almost 3 hours for the sick feeling to go away and I had just had one bite. Now if I go get Chinese food I make sure it's MSG free and the sauces are on the side.

Sara

[juliegee]

Lolo,

Your doctors seem to be on the right track with the mast cell disorder idea, intermingled with autonomic stuff. (I don't know anything about porphyria.) Mast cells travel via the nervous system so it is hard to separate the two. Unless you normally have a high serum typtase level, you probably don't have mastocytosis. That doesn't mean that your mast cells aren't the culprits. They could still be overly reactive. It is more likely that you have a mast cell disorder like mast cell activation disorder MCAD. Go to The Mastocytosis Society website www.tmsforacure.org to learn more.

After an episode of anaphylaxis, serum tryptase can be elevated for few hours. That can confirm anaphylaxis, but it's absence doesn't mean you didn't have it. To date, there is no reliable laboratory marker to definitively confirm anaphylaxis. Your episodes sound just like my anahylaxis and an epi-pen stops them for me. It's terrifying to use it because my heart is usually pounding so fast that I feel like I am going to die and an epi-pen contains epinepherine (which could speed it even further if it wasn't true anaphylaxis.) Thankfully, the two times I've used it, my heart rate returned to normal almost instantly. Sometimes, a benadryl or two can prevent me from having to use the epi-pen.

Your docs were probably looking for methylhistamine and prostaglandin D2 in your 24 hour urine. I guess both are indicators of MCAD. But, once again, their absence doesn't mean you don't have it. Your reaction to a combination of H-1 and H-2 blockers may be most telling.

Do you have symptoms like severe acid refux, bone pain, nausea, diarrhea, etc.? These are further indications of a mast cell problem. I use a complex regimen of meds to maintain "normalcy." Most are OTC so ask your doc if you could safely give the regimen a try. I take: 150mg ranitidine in the AM and 150mg ranitidine in the PM (This is a type of antihistamine & acid reducer). In the AM, I also take 10mg zyrtec and 10mg of singulair. At night, 25mg of benadryl, and an 81mg enteric coated aspirin. Some with MCAD have trouble/anaphylaxis with aspirin, but they are recommended (if you can tolerate it) as they reduce prostoglandins that cause everything to flare.

Since I've been on this regimen, I feel so much better. Once I get Dr. Castell's input, I may add a mast cell stabilizer like gastrocrom or ketofin to my regimen to further stabilize things.

I have an idea about the blood in your urine. When I was younger, I suffered horribly for about 5 years with interstitial cystitis. I had a few very severe bladder infections, and then I developed symptoms (like blood in my urine, a strong need to go, but was unable, lower abdominal pain, etc) all without the presence of bacteria in my urine. A cystoscopy revealed that m bladder was horribly inflamed. If a biopsy had been done properly, I'm sure that it would have showed a high number of mast cells. Mast cells are strongly implicated in this condition. Just a thought if you are also having these symptoms. I am in remission with this part of things for now. Thank God.

I'm sorry to ramble on and I'm even sorrier that you are dealing with all of this. I suspect that many here have mast cell issues and do not realize it. Please let me know what you learn & I'll do the same.

Julie