Hi, I'm new to this forum. I was very healthy up until I got sick around 2001. I had severe fatigue, cough & wheezing, weakness on my left side, tremor, and severe chronic itching on my arms (no rash or hives.) I was negative for mono but eventually tested positive for Epstein-Barr virus. Prior to getting sick I was allergic to cats, wool and ragweed. After this illness I have never been the same. I now have asthma, severe bouts of itching (mostly on my arms but when I have a bad spell I can get itchy everywhere), chronic fatigue, idiopathic neuropathy, bipolar disorder. I have been skin tested twice (once here in Maine, and also when I lived in California) and I'm allergic to all tree pollens, all weeds except nettle, and all grasses. Molds weren't too much of an issue but I also was sensitive to wheat, corn, soy, peas, and others. I have been trying to figure out for years what is wrong. It's frustrating because I used to be able to do anything, now I can't even work. I have a severe brain fog problem, I can't concentrate or focus well. When I'm having an "attack" I itch so bad I take the skin off myself. Elimination diets have been somewhat helpful but sometimes I react to a certain food and other times I can eat it without a problem. When I'm having a bad spell I'm worse if I get constipated or have to urinate and can't go right away, almost as if there are "toxins" or something that have built up in my bladder and bowels. When I heard about Mastocytosis I was on the internet looking for help because I was too itchy to sleep. That's when  I found this forum. I was so sure I had some type of mast cell disorder based on the experiences I've read here that I had my doctor check my tryptase level but it's normal. I just want to know how I can get a diagnosis for sure. I have been tested for so many things: MS, Lyme, heavy metal testing, hepatitis, HIV, Sjogrens. All negative. I know that certain things can trigger an itchy spell for me. I have changed things over the years to eliminate other possible sources, such as pets, lotions, soaps, deoderents, shampoos, laundry detergents, fabrics, pillows and bedding. I have been prescribed lotions and creams for the itching, nothing works except ice to numb my skin. I don't drink alcohol, I don't smoke or use drugs. My prescription medications have varied over the years. The past 2 years I have had to go to the ER with chest pain but I had a treadmill test and my heart seems fine. It's almost as though this illness manifests in 2 ways for me: Itching in my skin, or a systemic kind of manifestation where my asthma gets bad, I have shortness of breath on exertion and chest pain. Recently my liver enzymes have been elevated but my doctor said a liver ultrasound came back normal. Any feedback would be appreciated. I recently saw another allergist who was pretty unhelpful. He dismissed my concern about having a mast cell disorder by saying "most people with that are fainting."  I wanted to say "most people don't get a diagnosis until they're in their 50's, I'll come back when I'm faiting and maybe then you'll consider it." I'm frustrated and I'm sick of doctors that probably think I'm some kind of nut. But I've lived in this body for 46 years and I know something is going on. What is a good next step? Thank you all.

Hmmmm. Interesting. Well, most people with mast cell disease are not aafainting (only some are), and most people aren't diagnosed in their 50s (the age tends to be any adult age, although I have noticed a lot of late 20s, early 30s. It can be any age, though, even childhood.)

It appears that your main symptom is itching. You have some breathing issues also from what I gather. It is too hard to tell if you have mast cell disease based on just that because we generally have more symptoms that are different than what you described. HOWEVER, don't despair! That doesn't mean you don't have мast cell disease because the nature of this crazy condition is that we all have different symptoms and different combinations of symptoms.

The first thing you can do is to investigate this on your own. Have you ever tried a zyrtec or allegra? If not, next time you get even slightly itchy, you could try one. It should work within 20 minutes. It might not eliminate your itchiness, but it should reduce it. If it does, then you are on the right track. Some people respond better to Allegra and some better to Zyrtec.

Now you also have allergies. Most of us don't have allergies, which is a clue to look at mast cell disease. However, as before, some of us do have allergies. Even if you have a normal tryptase, you could still have mast cell disease. I do. However the next step is to look at your symptoms, try some standard histamine blockers, and see if they help. There are other tests as well. Typically our tests are to rule out other diseases. If we test negative to everything, then we might get a diagnosis of mast cell
Activtion syndrome (MCAS).  It's tok hard to tell with the symptoms you listed.

Since your current doc is not interested in further testing, you need to find a doc who will test and who knows what he is doing. On the east coast, we tend to tell people to seek out Dr. Castells or Dr. Akin in Boston.

Another excellent med to combat itchiness is Singulair. That is prescription, though.

These are just my initial thoughts. I will be interested in seeing some additional points of views here

Tangly, you are living so close to Boston, where some of our best experts are located.   There are several doctors at B&W who know well MC disorders and I think your doctor referring you on to Dr. Castells or Akin is PERFECT and you should pursue it.  

Deb is correct, not everyone faints and there plenty of 20 and 30 year olds here and my masto came out of hiding when I was 46!  So, obviously your doctor´s not on top of this and if you have MCAS he´ll not recognize it.  So, I recommend you see the Boston docs!!!


Lisa