This is a lovely community.  Right now I am a visitor; thank you for taking the time to read about my experiences.  I hope this post is not too long.

I am 49 and was diagnosed with Hashimoto's thyroidits in 1994.  However, for the past year and a half, I've been coping with many disruptive symptoms that leave me feeling sick and unwell.  I believe they cannot be accounted for by perimenopause.  They include: unspecified small urticaria that leave brown flat spots, small freckles or strawberry colored marks; dermatographism, burning and itching skin; paresthesias; photosensitivity; petechiae; rashing; mild swelling in my eye lids and feet; mild to moderate tightness in my throat; irritating cough; terrible pressure and pain at the back of my head; sensitivity to sound; lightheadedness/dizzyness; brain fog; poor sleep; nausea; loss of appetite; weight loss and fatigue.  Symptoms flare with heat, alcohol, exposure to perfumed candles and aerosol sprays and my menstrual cycle.  I obtain some relief from the burning skin and urticaria with zyrtec and claritin. I have never had to go to the ER and I find the pain and pressure at the back of my head the most disruptive of all my symptoms.

With regard to testing: my tryptase was a 2; I'm waiting for my 24 hr urine results; skin biopsy for one of the raised spots revealed moderately dense, perivascular round cell infiltrate with numerous eosinophils about the superficial and deep dermal vessels"...dermal hypersensitivity reaction was the diagnosis; I'm not sure if this specimen was appropriately prepared for mast cell eval; cbc and comprehensive metabolic are all normal; lyme disease, MS, lupus and other autoimmune disorders have been ruled out; my last tsh was .69.

I am wondering is anyone knows a mast cell specialist in the Philadelphia area? My primary care physician is wonderful and indicated he has never diagnosed anyone with mastocytosis.  Recent negative experience with a dermatologist. Willing to travel to DC or Boston for evaluation, if that makes sense based on my symptoms.

Hello and welcome. I would get a copy of your pathology report from your skin biopsy. It should say on there what stain they used for the mast cells. When I was reading what you wrote about the diagnoses many of the things you said sounded just like my path report.
I would get a second opinion from another dermatologist who has diagnosed masto. Call and ask around. Thats what I had to do. The first dermatologist told me telangiectasia. But when I got a copy of the report it also had a differential diagnoses of TMEP which is  a sub type of UP. Doctor never mentioned it. I went to the new dermatologist and explained all my symptoms and how I thought it was connected. She agreed and looked at all my spots and said it was TMEP. It is good you are willing to travel to see a good doctor. It will probably save you a lot of time. If you wanna learn more about TMEP I posted some info on it under General category and it should say TMEP info. Welcome again.
Melissa

Hi. I am going to give you my phone number as you probably live close to me. [Phone number removed by admin due to safety concerns. Please use private messages for phone numbers.] There are a few local doctors that seem to be knowledgable in Mastocytosis and they are willing to work with the doctors in Boston. I will see what numbers I can get for you. Boston in the best place to go and I understand Dr. Castlells will answer your e-mails and if necessary arrange a phone consultation so I will get you her contact info also. I am not a doctor but it sounds to me as that you have all of the classic symptoms. If you go to the Canada Mastosytosis Society webpage thier opening statement sounds very much like the symptoms you have. I see a hemotologist at Fox Chase Cancer Center in Phila and although I am sure he would be glad to see you I don't think he would be much help with the diagnostic process. If you decide to have a bone marrow biopsy he is great for that,. I will get you the info and post it here and in the meantime please feel free to call me. I just had a support group meeting at my house on the 21st so I will get the numbers from all of thier doctors as soon as I can.Kathie