Anybody with a NORMAL TRYPTASE has no reason to be concerned about ASM - period.
The tryptase level reflects the MC burden within the marrow. Aggreesive masto shows very high tryptase levels and the climb very quickly.
Remember, the key in that diagnosis is the word AGGRESSIVE.
The disease behaves aggressively and that does NOT MEAN SYMPTOMS!! It means that it will show
horribly off CBCs
and
horribly off tryptase and other markers!!
Thus the word Aggressive.
Aggressive masto will also show enlarged lymph nodes together with enlarged spleen or pancrease or liver and the MALFUNCTION OF THOSE ORGANS. You canīt suspect aggressive masto just cause there is an enlarged organ or node, it also must accompany the MALFUNCTION of those organs and the malfunction of those organs will show up in other exams.
This is why ou CBCs are so important for our doctors. The CBC shows the function of the bone marrow and the blood making organs. If the CBCs are pretty and normal or close normal, then the bone marrow is not seriously compromised and is functioning properly. The same will go with the other blood and urine tests which show how the pancreas, liver, kidneys, spleen and heart are all functions. If your tests show normal or near normal levels, then THERE IS NOTHING TO WORRY ABOUT....
YOU DO NOT HAVE AGGRESSIVE MASTO!!!
Aggressive masto SCREAMS
at the doctors and is very easy to find! Itīs the easiest of all forms of mastocytosis to diagnose cause the patient is so obviously sick and their exams SHOW IT.
According to Dr. Castells and other authorities, you can not judge the severity of the disease and the damage it is doing by your symptoms. This is the MAJOR MISTAKE that doctors and patients make when they are dealing with their disease. This is because the majority of diseases work this way. Masto is a disease which BREAKS RULES and it does what no other disease will do. There are some masto patients who died from aggressive masto and never had a clue they were sick!!! They are found only on autopsy. And yet the contradiction is there are some patients who have MCAS and are housebound due to how very sick they are, and yet these patients DRIVE THEIR DOCTORS MAD
because they canīt find a single bit of PROOF to warrant the severity of the symptoms and are constantly being told by their doctors that itīs ALL IN THEIR MIND"!!!!!
The fault is NOT that of the doctors, for they are thinking within the box as to how almost every other disease out there behaves. But the wacko masto
breaks rules and doesnīt follow the crowd and DOES ITīS OWN THING!!!!
So, Jane, please, please take a deep breath, let it out slowly and say to yourself, I DO NOT HAVE AGGRESSIVE MASTO, I AM DOING WELL!!!
Then, make an appointment for the hematologist so that you can take a further look into your illness and do a checkup on your body. It is necessary to have the support of a hematologist, yes, for it is a blood disorder and to make sure that all remains fine and well with you itīs necessary to know what form you have and establish a baseline so that you can keep an eye on your health.
I hope this helps!
Lisa