Victoria Posted March 14, 2011 Report Share Posted March 14, 2011 Wow! I fit the hyperadrenergic POTS/MCAD profile to a T. What tests are performed to cinch the diagnosis, and where is the very best place to go? What is involved in this type of testing? I will <gulp> reconsider Mayo if they're truly familiar with it.Thanks so much. You guys are a Godsend! Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted March 15, 2011 Report Share Posted March 15, 2011 It is quite an amazing feeling, isn't it, to read that article and realize finally there are words for what we are going through. I was diagnosed with hyper POTS through tilt table test with catecholamine levels, up here in Canada. But even my autonomic doc was pretty unfamiliar with the MCAD concept - I was lucky enough to find a dermatologist who was willing to try the meds with me (which helped a lot), but I am still looking for someone who can help me put the pieces together.I can't remember if I suggested this before, but try to watch the "Mast Cell Activation" videos on youtube made by Dr. Castells and her colleagues. You might be able to get the meds though your family doc and get some symptoms relief while you wait to see Dr. Gribb. Also I find the Mastocytosis Society Canada a great place for support and info (you don't have to be Canadian).I wish you well, and let us know what happens. Sorry I can't be more helpful. Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 15, 2011 Author Report Share Posted March 15, 2011 It is quite an amazing feeling, isn't it, to read that article and realize finally there are words for what we are going through. I was diagnosed with hyper POTS through tilt table test with catecholamine levels, up here in Canada. But even my autonomic doc was pretty unfamiliar with the MCAD concept - I was lucky enough to find a dermatologist who was willing to try the meds with me (which helped a lot), but I am still looking for someone who can help me put the pieces together.I can't remember if I suggested this before, but try to watch the "Mast Cell Activation" videos on youtube made by Dr. Castells and her colleagues. You might be able to get the meds though your family doc and get some symptoms relief while you wait to see Dr. Gribb. Also I find the Mastocytosis Society Canada a great place for support and info (you don't have to be Canadian).I wish you well, and let us know what happens. Sorry I can't be more helpful.I watched the video and I don't think I have that same type of rash, but my 14-year-old does. It worsens after he's been emotional or if he gets too hot. Yikes! Mayo said my rash is folliculitis. But I do have most of the other symptoms. For instance, I flush, have GI pain, chest pain, have horrid episodes of watery diarrhea and I'm completely alcohol intolerant. I can't even take a sip of wine without getting seriously ill. Not that I want to imbibe, but I've always wondered why alcohol affects me like that. Could this be it?My internist won't help — he doesn't quite get what I've been trying to explain to him and I think he's frustrated with me. Hubby isn't happy with me planning to see yet another doctor because we can't afford it. He'll get used to the idea in time, I guess.Thanks for this, Sarah. Some of the puzzles are fitting together nicely.All the best,Victoria Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 16, 2011 Report Share Posted March 16, 2011 Victoria, do you know if they tested you for Carcinoid? The watery diarrhea, along with the flushing, etc. sound like it. Just don't forget to ask to be tested for all possibilities. Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 16, 2011 Author Report Share Posted March 16, 2011 Victoria, do you know if they tested you for Carcinoid? The watery diarrhea, along with the flushing, etc. sound like it. Just don't forget to ask to be tested for all possibilities.No, I haven't. If I could get anyone to do it I would. When they hear I've had the same symptoms for 29 years with no resolution I typically get the eye roll. The Mast Cell Activation video on youtube.com mentioned flushing and watery diarrhea. But if carcinoid syndrome, what testing would need to be done to rule it out?Thanks! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 16, 2011 Report Share Posted March 16, 2011 Oh, if you've had it for 29 years, it wouldn't be Carcinoid then. I guess that was ruled out by time! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 17, 2011 Report Share Posted March 17, 2011 Just an FYI, my mom is 62 and has had symptoms of carcinoid syndrome since childhood. It is the slowest growing cancer that is known. It can't hurt to be tested. The best test is a chromagranin A (blood test), but a 5HIAA is better than nothing and most physicians are familiar with it. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 17, 2011 Report Share Posted March 17, 2011 Thankful, thanks for stepping in and letting us know! Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 18, 2011 Author Report Share Posted March 18, 2011 Just an FYI, my mom is 62 and has had symptoms of carcinoid syndrome since childhood. It is the slowest growing cancer that is known. It can't hurt to be tested. The best test is a chromagranin A (blood test), but a 5HIAA is better than nothing and most physicians are familiar with it.I have another endoscopy and colonoscopy coming up this month. I'll ask about it. Thank you very much for the info. Does your mom also have POTS symptoms? Quote Link to comment Share on other sites More sharing options...
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