Lindsay,
POTs is something very common to masto patients and this is because it has been PROVEN to be caused by mast cell deganulation. It's like Interstitial Cystitis and Fibromyalgia, a lot of masto patients have these issues for the basis for our disease is a Mast Cell Disorder.
Let me see if I can help you all gain more understanding about this.
The mast cell is the key immunological cell. It's being studied by researchers to find out how it functions within the body. It is found throughout the entire body for it's not only needed for the body's defense system, but it also has chemicals inside of it which help build the body and keep it healthy. It's necessary to keep blood vessel growth and health and so wherever you have blood vessels, you've got mast cells. It's involved in inflammation so wherever you have any kind of inflammation, like a cut or an infection, there are mast cells. It's involved in the body's defense to ward off invaders and infections and allergies, so there you've got mast cells. They are finding it involved in many diseases as well! They've linked mast cells to fat cells and diabetes even! It's EVERYWHERE!!!!!!!! And where you have most of them is in the skin, the bone marrow and the blood making organs and the intestines. Why? Well, in the bone marrow and blood making organs you find them because that's where they are made. In the intestines and skin you find tons there due to their necessary function in protecting the body, etc. So, this is their normal place of activity and function and how life is meant to be for us in our living with mast cells.
Yet what is a Mast Cell Disorder? It's a malfunction of the mast cell. Right now the researchers have put them into two groups - one as a proliferation disorder where there are way too many of them and another which is an activation disorder, which is in truth a malfunction problem. These are genetic disorders and the fact that there is something genetically wrong with these mast cells means that it's not influenced by something you eat or such things - it's something wrong at it's very foundation. So, that being so, it's not going to be isolated into any one particular area, it's going to affection your entire body.
Now, according to research there are different forms pf MCDs and depending upon what form of the disorder your mast cells have will influence how the disease shows itself in your body - it's a genetic thing and since each of us have different genes, depending upon where that defect is influences how your body is going to respond.
This is what confuses doctors who don't know masto. It's such a rare disorder that if a doctor sees 1 patient in his career he's fortunate!!! This disease affects 1 in 300,000 - 500,000 patients! When I told my gastro this his eye popped out like this!
and he about choked!! For him to realize what he had sitting in front of him and to know that my son was in this same boat about floored him for I don't think he's ever come across such a rare patient in his entire career! This is how rare we are!
So, when you see your doctors, they aren't prepared to deal with such a rare disease for they NEVER see any patients with this. They can't make the connections. It's a connect-the-dots game with an image they've never seen before! They've no clues as to what the final picture will look like for they've never seen the picture before! This is what they are up against! Imagine putting together a puzzle without any kind of picture to go by!! I remember when I was a girl there was a puzzle called Red Riding Hood's Red Hood. The puzzle was 5,000 pieces of only shades of red! Can you imagine how tough it would be to put this puzzle together without a picture to guide you?
THIS is what our doctors who don't know masto are up against!
So, this explains why they look at different symptoms and think, Well, that's the problem! They don't know that something is behind it all! But if they could take a look at your constellation of symptoms with one disease in mind, having that picture on the box to guide them, THEN the pieces begin make sense and fall into their proper places.
So, in looking at everything in light of a mast cell disorder, your symptoms begin to make sense for if you had but one issue or perhaps two, then you'd say, well, they are isolated things, but when you have a number of things wrong and every one of them involves mast cells, then you've got to question if it's not a mast cell disorder as the basis for it all!
Does this make sense? I hope so.
Lisa
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