Kay
Rookie
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Posts: 11
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Hi Everyone,
I am new as a member here, but have been reading forum posts for a while. Like most of you, I have been doing my homework reading everything I can find that might be relevant to my case, both from the doctors' and patients' perspectives to get a better understanding of what is going on with my body.
As of yet, I do not have a diagnosis.
Background information would include decades of allergies to many things with a long and growing list that includes various plants, animals, dust, metals, medications, foods and contrast dye. For many years, I endured the misery of shots that would leave my arms very swollen and bruised and me sick for at least 24 hours, and this was on smallest doses. I quit immunotherapy after having an anaphylactic reaction to a shot about ten years ago. It just was not worth the price.
Then eight months ago, I started having problems with tachycardia so I went to a cardiologist. At the same time I was having problems with GI and other symptoms, but thought it was something separate that I could deal with when the heart issue was figured out. The cardiologist was of no help telling me it was a normal, but fast heart rate, a nuisance to learn to live with.
Since all the other symptoms seem to be clustered with the tachycardia and most of my problems seem to be allergy related, that is where I went next- allergist.
My reactions are to foods that are known allergens, foods that are not allergens, contrast dye, heat, exercise, NSAIDs and other meds. Reactions include a wide range on the sliding scale from mild anaphylaxis to moderate, but no hospitalization to document episodes. Long list of symptoms involving 4 of 5 organ systems but without skin involvement except as flushing.
Symptoms include: flushing, tachycardia, headache, lightheadedness, pre-syncope, tinnitus, nasal congestion, nasal itching, itching in mouth, itching in throat, itching in ears, itchy hands, itchy feet, sore throat, stomach pain, cramping, nausea, diarrhea, gas, bloating, oh and "brain fog". These symptoms are much milder or infrequent on now that I am on higher doses of antihistamines. There is almost never a symptom free day- just some better and some worse.
When this first started with the tachycardia, and before taking higher doses of antihistamines, there were many times I should have used an Epi-Pen, but the presentation of symptoms has been so different from my first experience of anaphylaxis with the allergy shot that I did not recognize if for what it is. With the allergy shot, the cause and effect was obvious. But when your heart, which is running a race, wakes you up in the middle of the night, you feel overheated with the air conditioner on (but no sweating), with your gut in knots, and what feels like a sudden cold. No, it is hard recognize as the same thing. Fortunately, my allergist did and he gave me an Epi-Pen prescription and ordered tryptase tests and sent me to another allergist.
Now, I am up against a wall because my tryptase test results (lowest at 13 and highest just below 18) put me just outside mast cell disorders parameters even though my symptoms are consistent with a mast cell activation disorder and I have had a good (but far from perfect) response to H1 and H2 antihistamines. Staying away from known triggers does help.
Since there is no mast cell diagnosis, I am left doing the rounds with various doctors to rule out differential diagnoses. So far, carcinoid tumor is ruled out. And after they are all crossed off the list, where will that leave me?
From what I have read about mast cell disorders, I believe that my allergist was right in suspecting mast cell disorder, but with another doctor saying I am outside the parameters it leaves me without any where to go except to continue the ruling out differentials. And maybe in the meantime, if things get worse, my numbers will reach a point that they fit the parameters.
I keep thinking that at the rate that at which mast cell disorders keep getting redefined and broadened, maybe I won't have to wait too long. Meanwhile, I am glad that I have an allergist who listens to me and is working with me on helping to keep my symptoms under control. I would love feedback from other members. It is wonderful that there is a forum for people with mast cell disorders (or might have), but sad that there are so many that are ill with this supposedly rare disorder to need a forum.
I wish everyone of you well.
Kay
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