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Good Morning Everyone,
My name is Maureen and I am new here. I have been experienced weird symptoms for many years and just thought I was odd and learned to live my life around them. I was diagnosed with IBS many years ago (too long to really even remember properly) as well as acid reflux and GERD. I have been on nexium for more years than I can recall. I have ALWAYS, even as a child had issues with my digestive track and bowels, as a child I remember a neighbor who was a nurse coming over to give me enemas. Again, I just thought everyone lived there life scoping out bathrooms and living with distention of the belly and having either diarrhea or constipation. In Jan of 2012 everything just hit the fan for me health wise. I was experiencing hives that would swell my eyes shut, form large itchy welts all over my body and generally make my life miserable. The middle of Jan 2012, I finally went to my doctors when my lower face, right side, started getting hard and then moved across my face over my lips and up to my left ear. I was diagnosed with angioedema and put on prednisone. I was on prednisone pretty much from then until the end of June when I couldn't take the weight gain, the eating as though I was a starving person who had never seen food before AND the hives started up again even while on the drug. AND of course, well meaning people kept telling me it was all stress related and that was my only problem (I was at the Atlantis on vacation when I was getting the hives while on the prednisone, so stress really wasn't a factor as far as I was concerned) At this point I was also getting hives on the soles of my feet making walking difficult at best as well as on the palms of my hands.
My MD was flummoxed and had no idea what to do with me, I believe at this point he said I was a conundrum wrapped in an enigma and he was lost. I started seeing an allergist who was gung ho on finding out what was wrong with me. After many tests, skin tests, allergy testing, blood tests, she finally, at her wits end decided to have me do a tryptase test, it came back at 42. She then had me see a dermatologist to check me over for urticaria pigmentosa, which came back negative. She did biopsy some of the hives and found them to be filled with mast cells.
I then went on to see a hematologist who did a bone marrow biopsy but again, that also came back negative. In part here is an excerpt of the findings:
Focal slight increase in mast cells with associated lymphoid aggregrates, favor reactive.
Lymphoid aggregrates with hemosiderin-laden macrophages present, favor reactive
Immunostains: CD117 and Tryptase stains show scattered mast cells, CD25 is negative on the mast cells.
NOTE: Focally mast cells are slightly increased based on CD117 and Tryptase stains. CD25 is negative on the mast cells. No spindle cell morphology seen. The absence of CD25 on mast cells and the absence of spindle cell morphology suggest a reactive process. Suggest clinical follow up.
My allergist looked into sending me to NIH in MD, and contacted Dr Dean Metcalfe in August of last but at that time he said I did not meet any criteria he was working on July on.
She called the hematologist early in Feb of 2013 and she suggested I see Dr Cem Akin at Brigham Women’s in Boston and his office sent me a list of tests to have done before I even get an appointment. When he gets the results he will decide then if he will take my case.
I have had 2 additional tryptase tests since then my levels were 31 and then 33 (this Jan). I have since done a 24 hour urine test done and am waiting on the results. They were sent to the Mayo Clinic and I am not sure how long it takes to get the results back, but I am anxiously waiting for the outcome. They are testing for N-methyl histamine #10243 and 11-Beta prostaglandin – F2.
My symptoms: itchy skin, abdominal pain, belly distention, extreme fatigue, diarrhea/ constipation, muscle pain, joint pain, aches and pains all over, weakness in my hands when they are hurting, hives that sometimes feel like they are growing UNDER my skin and drive me even crazier than the ones that appear on my skin. My face hand and body blow up and I look puffy all the time and I can’t make a fist most days. Brain fog ALL the time, I forget words and people’s names, all the time. I also have issues with medicines and react very strongly to them. A child’s dose of Benadryl will make me stones for 24 hours.
I am on nexium every day 40 mg,
zyzal ( I think) which makes me drugged for DAYS, so I don’t take it.
prescription strength Zantac 300 mg twice a day
hydrochlorothiazide 25 mg for high blood pressure
I carry an EPI PEN wherever I go.
I have to be careful to NEVER take any medicine that is Sulfa based. My first reaction to sulfa was so bad, my doctors said I would die the next time. My uvula swelled down to my tongue and I had open sores in my mouth.
I am so happy to finally “meet” up with people who have the same symptoms I have.
Nice to meet you all
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