Susan
Guiding Light
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I Love YaBB 2!
Posts: 211
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OK, my worst fears with the allergist were confirmed. Yesterday I got a voice message (he didn't even bother to talk to me) telling me all of my allergy testing was normal, so he doesn't need to see me unless I have another anaphylactic event.
My tryptase was 5.8, so he is saying that rules out mastocytosis. With no IgE allergies, he is basically dismissing all of my other symptoms, plus that fact that some significant symptoms are improved or gone on high dose antihistamines.
No appointment, no discussion, just Bye Bye!
He obviously does not know or does not believe in MCAD.
My GI doc is going to be doing some testing for me, including biopsies, but I don't think he knows about anything more than textbook mastocytosis either. He will be checking some other possibilities that do need to be ruled out, which is good, but I am afraid he will leave me in the same boat as the allergist.
I'm in northern California. I am not well enough to travel to the midwest or the east coast. I do VERY poorly in airplanes. Plus, I am not sure I could afford it. No way could I fly in and out on the same day, or even the next day, so I will have lodging expenses, and possibly expenses for a caretaker to travel with me. I might be willing to try to pull this off if it was my only choice, and I had a good reason to believe some type of mast cell issue was the main cause of some of my worst symptoms, but it would be a big risk as to how I would make it through the trip. I have spent many, many thousands of dollars chasing diagnosis and treatment, and I just don't have it any more. Physically or financially.
Well, that is the pity party. I am hoping there might be some idea, or someone here on the west coast I could see to take this further. I could tolerate a trip to southern CA, or something that might top out at a 2-3 hour air flight, so I don't get totally trashed by the travel before I even see the doctor. Or maybe there is other testing I should do to make things more clear?
I have already tested: 24 hour 5HIIA - normal 24 hour urine histamine - normal IgE - 92 Tryptase - 5.8 All blood testing for IgE allergies - negative except for a very few things showing low levels of reactivity. I show low levels of elevated eosinophils sometimes on my CBC. My metabolic panels are all normal. I do show inflammatory markers like C4a that are elevated to very highly elevated (run between 8,000-42,000, normal range is <2830). Some natural killer cells are very low, below range long term (CD57). My CRP, sed rates, ANA, etc are all good, and have always been. No lab tests that indicate autoimmune issues, except for elevated anti-thyroid antibodies. Vitamin D levels are very low, even with supplementing. I did show osteopenia 6 years ago, just had a new bone scan today, will find out if it has progressed.
Why would I have such good responses to antihistamines if these symptoms are not somehow histamine related?
My shortness of breath, which was bad even sitting, is now only noticeable if I am walking very fast. My chest pain is gone unless I slip and forget one of the antihistamines I am taking. The trouble swallowing and throat swelling is gone. The tachycardia is gone, as is the easily elevated blood pressure, and the fast swings between high and low. My flushing is hugely reduced. The rash I have had on my forearm is healing, the redness is pretty much gone, and even the thickened tissue is looking better. All of the general itching is much improved at higher doses of Zyrtec. The severe, long term constipation and bowel paralysis is better, almost gone. I am still having swelling in hands, feet, and bowel, and haven't figured out if that could be corrected with this, but I wonder if something like Gastrocrom might help, or Singular.
Any really good ideas? Does anyone know someone who is good with mast cells out here? The only doctor I know at Stanford does not take people until they already have the diagnosis, and even then prefers to see those who have aggressive disease. I don't think what I have would be considered aggressive. I am very disabled, but am not a shocker, so can manage life fairly OK if I keep my life contained within the circle that I know is safe for me.
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