Mastocytosis - Open to All Other Health Topics Message Board

Calder · 12-15-2006, 06:48 AM

Hello, I need some help. I had a severe anaphylactic reaction in July of 2006. My 24 hour urine histamine levels came back twice at 250 and then 267. Tryptase levels are normal and I had a negative bone marrow biopsy.

My symptoms are diarrhea, nausea with cramping, headaches, bone and muscle pain, extreme flushing at times, fluttering in my chest and tightness in breathing, nervousness and mental confusion, and coughing.

The doctors suspect systemic mastocytosis. They tested for carcinoid but my seretonin levels are normal. I have no skin lesions or problems.

The problem is the doctors don't know what to do with me since my bone marrow and tryptase levels came back normal. They are still suspecting mastocytosis becasue of my symptoms and elevated histamine levels...plus the anaphylactic reaction. My reaction started with severe cramping and diarrhea, flushing, a rash, cold sweat, could not breath, blood pressure fell to 40 over nothing and it took 2 shots of epinephrine in the ambulance to get me going. I have since had 2 almost attacks but didn't get nearly as bad and didn't require epinephrine. I do carry a epi-pen at all times.

I have just gone through menopause so it is hard to wonder about the flushing.

Any help out there? Can you have mastocytosis and have normal tryptase and marrow levels? The tryptase was taken almost 4 weeks after the anaphylactic reaction. The marrow was taken 4 months after. My histamine remains up and the symptoms remain the same.

I appreciate any help I can get. Thank you!

WendyHall · 02-27-2007, 05:19 PM

I don't know if your still out there but just in case. I have malignant systemic mastocytosis. You need to have your tryptase level tested right after you have the anaphylaxis. Also if you had systemic mastocytosis it doesn't matter how long after the attack you have the bone marrow biopsy the mast cells would still show up. All be it if you have a minimal case of systemic masto the bone marrow biopsy could be hit or miss and the mast cells just aren't in the exact spot where they did the biopsy. Also there is such a thing as Idiopathic Anaphylaxis. You may not have mastocytosis just ideopathic anaphylaxis and the anaphylaxis will cause alot of your symptoms too.

Wendy

QUOTE=Calder;2697648]Hello, I need some help. I had a severe anaphylactic reaction in July of 2006. My 24 hour urine histamine levels came back twice at 250 and then 267. Tryptase levels are normal and I had a negative bone marrow biopsy.

My symptoms are diarrhea, nausea with cramping, headaches, bone and muscle pain, extreme flushing at times, fluttering in my chest and tightness in breathing, nervousness and mental confusion, and coughing.

The doctors suspect systemic mastocytosis. They tested for carcinoid but my seretonin levels are normal. I have no skin lesions or problems.

The problem is the doctors don't know what to do with me since my bone marrow and tryptase levels came back normal. They are still suspecting mastocytosis becasue of my symptoms and elevated histamine levels...plus the anaphylactic reaction. My reaction started with severe cramping and diarrhea, flushing, a rash, cold sweat, could not breath, blood pressure fell to 40 over nothing and it took 2 shots of epinephrine in the ambulance to get me going. I have since had 2 almost attacks but didn't get nearly as bad and didn't require epinephrine. I do carry a epi-pen at all times.

I have just gone through menopause so it is hard to wonder about the flushing.

Any help out there? Can you have mastocytosis and have normal tryptase and marrow levels? The tryptase was taken almost 4 weeks after the anaphylactic reaction. The marrow was taken 4 months after. My histamine remains up and the symptoms remain the same.

I appreciate any help I can get. Thank you![/QUOTE]