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Lisa
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Hi Lori,
Welcome to our home!! I'm glad you found us.
Lori, your doctors attitudes are typical, actually both of you have doctors with typical attitudes in that they don't KNOW masto and therefore don't understand the implications and consequences of not being medicated and educated properly. This is not right.
I urge you both to continue looking for doctors who understand this disease better. Your present doctors are underestimating the disease. Yes, it is an incurable disease and Yes, it's true that it's not a horribly aggressive disease, but this doesn't mean that it doesn't put us into danger nor is it debilitating. We masto patients have a RIGHT for our disease to be taken seriously for it does indeed put us through a great deal of grief and it can and does put us INTO DANGER!!
With all of us there is always the POTENTIAL for anaphylaxis and just because you don't have anaphylaxis as one of your major symptoms doesn't mean it can't or won't happen. And any kind of risky procedure always can put you into danger because you never know how you will react until you are in the midst of that procedure!! Our doctors need to know this so that the proper precautions can be taken.
Masto is not some skin disease like psoriasis or eczema! TMEP is not one of these minor skin disorders! TMEP is only ONE FORM of mastocytosis and you can indeed have systemic involvement as much as any of us who don't have a single spot on our skin! Without a hematologist taking a look at your bone marrow and blood work and doing a full workup of your case they can't say that it hasn't gone systemic. Those of you with skin lesions may indeed be fortunate and not have systemic involvement yet only your tryptase level is really the indicator of that. And, if your tryptase is over 20, then your doctors should do a baseline BMB and CHECK to see if they can find evidence of the MC aggegates.
REGARDLESS of what they find, if you are showing any kind of symptoms of systemic involvement, this must be TAKEN SERIOUSLY and you MUST be properly medicated! If you go through a lot of diarrhea, regardless of whether or not your tryptase is low, you are going to have issues with malabsorption. If you have gone systemic, then those MC aggregates are invading your bone marrow and then there come issues with anemia and osteoporosis and other matter.
So, just because it's MERELY TMEP is not an excuse to dismiss you as though you had eczema! Masto must be taken seriouslya and one of the reasons why is that you've got to be properly medicated in order to keep the triggering down. Many of us can find ourselves caught in a vicious cycle of triggering. Our MCs can end up triggering themselves when they get stuck in this situation. If you're not properly medicated you can accidentally get caught in this self-triggering situation and the ONLY way out of it is by being properly medicated with a doctor who KNOWS what he's doing.
Jenn, as to Canada, you are in a certain bind due to your health system for Canada has no recognized authorities in mastocytosis. I know the Canada masto site puts Dr. Sibbald on a high pedestal but he is not a mastocytosis researcher and doesn't claim to be. He's has been working with masto patients, yes, and has a good understanding as to mast cells due to their involvement with scarring, but his area of expertise is that as an authority on scarring and this is where his understanding of mastocytosis comes from, that of knowing mast cells and their role in the skin and from there he has specialized a bit with masto patients.
This puts Canadians in a bind because when you live in a country where there are no authorities in a specific disease, the rest of the medical community don't have anyone they can run to, nor does the information trickle down to lower level doctors. I live with this very same challenge in living in Brazil. I'm an American and have had to reach out to International Authorities to find help.
Another problem is that if you go to the Canada site, they will do everything to discourage you from going to the States and this isn't right. Due to the fact that Canada has no recognized authorities nor research center in mastocytosis, you have very few doctors to whom you can find your answers. Please understanding, I'm not bashing the site and we have other Canadians here who will confirm what I'm saying. We patients need help at times and we have the RIGHT to leave our countries and cross the borders in order to find that help. Those in Europe are much more accustomed to doing this than we Americans and Canadians are due to the sizes of our countries. Even here in Brazil, I've come to the end of my line and must now consider how I can afford to return to the States. it's a rare disease, and that means that the doctors are even more rare!!
If you really are considering going to the States, knowing what is involved, there is BUT ONE place I recommend to you: BOSTON!!! If you are going to go to the States, please go see either Dr. Cem Akin or Dr. Mariana Castells. They are considered our very best and they have a center for Excellence in Masto and that means that they have an entire group of doctors and pathologists who can do the full workup of your case. It would save you a lot of time and grief trying to find answers.
I'm not advertising them, I'm only saying what I would say to anybody here asking for advice. My hope is to get to Boston to see them for myself!
So, ladies, you've got some studying to do, some doctor hunting as well! We're here to help you and encourage you and to even cry with you if you need us!!
Hugs!!!
Lisa
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