Sarah4444 Posted November 18, 2010 Report Share Posted November 18, 2010 Well, so far I seem to be going all over North America collecting rare/strange diagnoses. Like Julie, I keep running into people with a statistically unlikely triad of conditions: POTS, a hereditary disorder of connective tissue/collagen defect, and mast cell issues of some kind. I read last year's thread about potential connections among these conditions and am wondering if people have any new insights/research they'd be willing to share. I drive myself nuts thinking about this; it seems plausible that mast cell dysfunction could underlie both POTS and connective tissue problems, but also that HDCTs could underlie mast cell problems and POTS...and so on. Does anybody have any theories/info about connections among these three issues? Quote Link to comment Share on other sites More sharing options...
Tuesday Posted November 18, 2010 Report Share Posted November 18, 2010 No theories or insight for you, but just another data point to add to your collection. I have POTS, my rheumatologist was not able to confirm EDS without a genetic test but told me he observed hypermobility and it seemed likely. I have not had any diagnoses for MCAD but have recently started having outbreaks of hives I can't pinpoint. So, whatever boat it is that you're talking about, count me in it. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 18, 2010 Report Share Posted November 18, 2010 Hi Sarah-You know I'm just as curious as you are- no definitive answers. I recently ran into a woman on a mast cell disorder forum who has Mastocytosis, Marfans's and POTS- another one!!!! I couldn't help but chuckle. I wrote to her and said I'm the "lite" version of you: MCAD, unknown connective tissue disorder, POTS. She, too, has found many of us I try to read as much research as I can regarding this connection. One interesting piece of literature that I recently stumbled across said that mast cells can actually remodel connective tissue. If that's true, that may be our connection. Both mast cell disorders and connective tissue disorders can cause POTS. Just google "Mast Cells Remodel Connective Tissue" - you'll get around 34,000 hits. Lots of research happening. One thing that recently freaked me out... More connections!!! When my blood sugar issues were really bad (they're better now), I joined a hypoglycemia forum to better understand this phenomenon. At that same time, I was broken out in full body, intractable hives. I chocked it up to the fact that the chronic hypoglycemia had stressed my body enough to get my MCAD symptoms flared. Lots of random posters had the same problem About a half dozen were also broken out in uncontrollable hives and complaining of autonomic issues. It was too much for me- I never posted there again Made me wonder if I was imagining connections.... Weird!Julie Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted November 19, 2010 Author Report Share Posted November 19, 2010 When it comes to blood sugar, doesn't the autonomic nervous system control hormone secretion to some degree? When I was reading about cholinergic urticaria I think I read that they suspect the skin condition may be somehow caused by sympathetic malfunction, which also seems to be possibly contributing to mast cell degranulation (as per the Shibao et al. hypothetical vicious cycle) - wouldn't it be weird if all of us with the same symptom set actually had a NET defect or something, and the POTS caused the mast cell issues, which then led to connective tissue "remodelling" or something? Although that wouldn't work with my family members on the connective tissue side who were born with deformed joints - unless it's already happening in utero. You see how I am driving myself mad with all this...and from what Dr. Francomano said, it seems an assault on the immune system is somehow involved too...aaarrgh Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 19, 2010 Report Share Posted November 19, 2010 When it comes to blood sugar, doesn't the autonomic nervous system control hormone secretion to some degree? When I was reading about cholinergic urticaria I think I read that they suspect the skin condition may be somehow caused by sympathetic malfunction, which also seems to be possibly contributing to mast cell degranulation (as per the Shibao et al. hypothetical vicious cycle) - wouldn't it be weird if all of us with the same symptom set actually had a NET defect or something, and the POTS caused the mast cell issues, which then led to connective tissue "remodelling" or something? Although that wouldn't work with my family members on the connective tissue side who were born with deformed joints - unless it's already happening in utero. You see how I am driving myself mad with all this...and from what Dr. Francomano said, it seems an assault on the immune system is somehow involved too...aaarrghAssault on the immune system??? That makes sense for me. My white blood cell count is pitifully low & dangerously dropping AND my "adapted immune system" (immunoglobulins) are equally pitiful. Very interesting.... Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted November 20, 2010 Author Report Share Posted November 20, 2010 I have another appointment by phone with Dr. Francomano soon and will try to get more info about her immune dysfunction theory. Also, I was hoping that some of the people who have wondered over the past couple of years if they had mast cells issues might post and let me know how that turned out for them? Quote Link to comment Share on other sites More sharing options...
crowebirds Posted November 20, 2010 Report Share Posted November 20, 2010 I started a detailed search into the connection between MCAD and Connective Tissue Disorders. Even when looking at some of the most basic principles of Connective Tissue, Mast Cells and POTS, you begin to find a very simplified connection.It did not take me long to find that Mast Cells are made up of Connective Tissue Cells. "Mast cells are - like macrophages, lymphocytes and eosinophils - in demand when something goes wrong in the connective tissue. " http://www.lab.anhb.uwa.edu.au/mb140/corepages/connective/connect.htmMCAD triggers a loss of fluid into the surrounding tissues. This fluid loss leads to low blood volume which can lead to at least one form of POTS. You don't always have the advantage of seeing the fluid loss as some reactions are in the internal structures. "Hives are produced by blood plasma leaking through tiny gaps between the cells lining small blood vessels in the skin. Histamine is a chemical released from cells in the skin called "mast cells," which lie along blood vessels." http://www.aad.org/public/publications/pamphlets/skin_urticaria.html I also found a connection between MCAD causing an andrenergic rush which would also be related to POTS. Sorry, I don't currently have that link. Still researching.From an overly simplified perspective, it could very well turn out that this is all a new connective tissue disorder. Quote Link to comment Share on other sites More sharing options...
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