Loulou Posted March 30, 2016 Report Share Posted March 30, 2016 Hi Everyone, My POTS Dr. is NOT currently seeing patients because he has POTS himself and is having a hard time medically. Could you please share how your mast cell began. I feel like I have a very mild case and really think mine is just in my lymph nodes and skin. But this could be just my not knowing enough on the subject of mast cell. My primary care doctor is (willing and trying) to treat me since I am unable to see my POTS Dr. and wrote a prescription for Singular and Clarinex on Monday. He told me he does not know a lot on either POTS or Mast Cell but is willing to try to treat me. So how and where you started would be great info. I have googled Mast cell and I understand the just of it. But what I don't find or see is how it began and what people first notice. And exactly what happens to the body when mast cell is active. Currently, I get tiny red spots or bigger blotchy red spots mostly after showering that does go away after an hour or so. I seem to have a lot of scattered Urticaria pigmentosa and diffuse cutaneous mastocytosis, that seem to never go away. At least based on the pictures on the internet. What kind of Dr do you see for treatment of your mast cell? Also, yesterday, I was diagnosed with Glaucoma, I am 44 years old. The normal age for Glaucoma is 60. So can Mast Cell cause Glaucoma? For you ladies, how do you cover mast cell on your face? Thank you for any info you can share and for listening. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 31, 2016 Report Share Posted March 31, 2016 I don't have a good answer for you as to what started it all. It seems to all run together. But, this paper is the most comprehensive paper I've found on mast cell by one of the top experts. It could be helpful for you and your doctor. Make sure to read all the figures and tables as there is tons of info in them. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm Quote Link to comment Share on other sites More sharing options...
Loulou Posted April 5, 2016 Author Report Share Posted April 5, 2016 Katybug, The website you posted is great. So very helpful. Thank you Quote Link to comment Share on other sites More sharing options...
TCP Posted April 7, 2016 Report Share Posted April 7, 2016 I believe EBV which gave me glandular fever activated the mast cells in 1984 and resulted in ME-type symptoms (autonomic dysfunction). Nine years ago I had a relapse and the more severe symptoms came on including POTS and neuropathic pain. Quote Link to comment Share on other sites More sharing options...
Loulou Posted April 8, 2016 Author Report Share Posted April 8, 2016 thank you all for your posts. Quote Link to comment Share on other sites More sharing options...
TCP Posted April 8, 2016 Report Share Posted April 8, 2016 I am also borderline glaucoma. My pressures go up and down. Quote Link to comment Share on other sites More sharing options...
Cu Mom Posted April 8, 2016 Report Share Posted April 8, 2016 I had an iron infusion in July 2014 and that is when I went completely off the rails! Previous to my diagnosis for MCAS and POTS, I was diagnosed and treated for narrow angle glacoma. I have come to the conclusion to not overlook any of the routine medical work ups like eye exams. I traveled to Minneapolis to see the author of the above article, Dr. Afrin. Something he said to me has really stuck. Paraphrasing, if you are having chest pain and think it could be a heart attack, get to the hospital. Mast Cell issues may be the cause but if you don't treat the immediate condition of the heart attack, dead is dead and the underlying cause doesn't matter. Don't overlook the basics like eye exam, mammograms, colonoscopy, etc! Quote Link to comment Share on other sites More sharing options...
Loulou Posted April 8, 2016 Author Report Share Posted April 8, 2016 Cu Mom, Thanks. great advice. I try to stay positive about these health issues, but every now and then when I need to be the Loulou before POTS and Mast cell, it gets the best of me. I feel like my doctors are just blowing me off and are unsure of how to really treat my issues. I feel as though I am having to be my own doctor and I don't know how either. I want my life back. Quote Link to comment Share on other sites More sharing options...
Cu Mom Posted April 8, 2016 Report Share Posted April 8, 2016 Loulou, You have nailed it! You might go out and about on a good day and people are like so what's wrong with you. On bad days, I stay home and lay low. No one sees those days so they have a hard time understanding. I am a crafter but My issues limit when i can do things and that is so frustrated! I want me back not only for me but also for my family! L Quote Link to comment Share on other sites More sharing options...
Loulou Posted April 8, 2016 Author Report Share Posted April 8, 2016 Hi, Another question for you all, I have had hair loss with my mast cell, once treatment begins helping does your hair come back and what about mast cell causes your hair to fall out? My pcm is trying to treat me and doesn't know much about it and is really just winging it... so I am a little worried it might be wrong and thing may get worse instead of better. But my hair loss and my skin issues are so embarrassing. Quote Link to comment Share on other sites More sharing options...
Loulou Posted April 8, 2016 Author Report Share Posted April 8, 2016 Cu Mom, I have gotten that question so many times and even comments behind my back of how I am lazy and stupid...I realize sometimes I can not get my words and thoughts out correctly but I was not like this before these health issues. How do they not remember the Loulou they called or came to for help when they needed me. People don't just grow stupid over time...it's so frustrating, but I guess you find out who your real friends are when something like this happens to you. I am so angry today, and all I can do is sit on this cough and deal with it. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted May 31, 2016 Report Share Posted May 31, 2016 Sorry I am adding to this thread late.. I have been off the forum for awhile.. I also have MCAS. . for me my specialists believe it was triggered by my Ehlers Danlos.. connective tissue disorder.. many of us POTSies have all 3 disorders as they travel together ? Quote Link to comment Share on other sites More sharing options...
issie Posted June 12, 2016 Report Share Posted June 12, 2016 Just throwing another idea out there. I'm guessing you are in the South and Dr Thompson is your doc. I recently did parent care of my parents before they both passed in AL. I got mold exposure and severe issues with my POTS and MCAS. Living in the South it's worth taking a look into. Also for me was Lyme and other protozoa. Also a big problem in the South. (I have several threads about this.) Issie Quote Link to comment Share on other sites More sharing options...
Loulou Posted June 13, 2016 Author Report Share Posted June 13, 2016 TCP, My pressure is going up and down too, my eye doctor says that the question is not if but when to start treatment. So I am going to hold off as long as I can. Thank you Quote Link to comment Share on other sites More sharing options...
Loulou Posted June 13, 2016 Author Report Share Posted June 13, 2016 Brethor9, Yousaid, "many of us POTSies have all 3 disorders as they travel together ?" Do you think that you had all three all along and they are just becoming too much to just push threw? Or that maybe one has caused the others? I can't believe the great things the medical world is able to do but can not figure out how to fix our issues. It's crazy. Quote Link to comment Share on other sites More sharing options...
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