Godsgal Posted May 11, 2011 Report Share Posted May 11, 2011 Okay...so I've been on a big rant lately about my skin biopsy because that is what has truly opened the door for me to get help with all this pots/dysautonomia stuff. There is NOTHING weird or suspicious about my skin. BUT I had a lot of the symptoms of MCAD so I decided to get it done just in case plus doctors did not buy what I was trying to say about mast cell activation being linked to POTS.Anyway, I have a friend here locally who has POTS & dysautonomia. She was bedridden 8 months. She had some MCAD symptoms.....dermatographism, used to have flushing but it stopped, sensitive to foods, headaches. I sent her to my dermatologist and he found 2 little spots on her back. One normal, one VERY HIGH with mast cells. Now she has the cutaneous masto diagnosis and is in complete shock. Just wanted to post this b/c a lot of people wonder about this and I figured I would mention it just in case. She was VERY skeptical but it came back positive. She has a negative tryptase just like me and hasn't had any other testing besides this.The doctor is Peter Wallach in Coral Springs, FL just in case anyone is near here. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted May 11, 2011 Author Report Share Posted May 11, 2011 I just want to add that you can have mast cell activation issues and it not be in your skin......at least I'm pretty sure that is the case. Someone else correct me if I'm wrong.... Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 11, 2011 Report Share Posted May 11, 2011 You are correct- getting to be the expert I know you wish you weren't.That is UNBELIEVABLE about your friend. Is hers UP as well or just a cutaneous masto? We are taught this is so rare w/o tryptase involvement. Many docs, Afrin among them, thinks it is more common (MCAD at least) just under-DXed. Was your friend's skin as benign looking as yours? Thanks for sharing. You are educating us all.Julie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 12, 2011 Report Share Posted May 12, 2011 oh great. After I just wasted an appt. with an allergist trying to get some testing for MCAD(or even have them entertain the idea). Oh gosh, I doubt I could even find a dermatologist that would even cater to the MCAD theory.That really sounds great for your friend! Now, with a trial of meds, she might be able to do something. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted May 12, 2011 Author Report Share Posted May 12, 2011 Forget about them catering to any theories. A good dermatologist will know UP, cutaneous masto, etc so you don't even have to mention that to them. Thank God! Go in and tell them you want them to biopsy your skin and do a mast cell stain on it. If they need a reason, tell them you have a rare condition that is pointing to a mast cell problem being the cause. Get a doc who knows what they are doing so they pick a spot that actually has mast cells in it (if in fact you had them). Quote Link to comment Share on other sites More sharing options...
Victoria Posted May 12, 2011 Report Share Posted May 12, 2011 Good advice, and thanks for posting. I tried to get my GI doc to stain for mast cells during my endoscopy, but he said he couldn't do it. I do have some unusual comments (more like the GI docs are questioning their findings) in all of my biopsy reports. I can't lay my hands on them right now.I have some quirky skin rashes that flare up here and there. Jared, I looked at your photos and my rashes also look pretty innocuous.My question is: over time can the rash turn into brownish spots that look like freckles? I've been told mine are freckles (no biopsies), but people don't develop freckles in adulthood, do they? I was truly freckle faced as a kid but they've disappeared with age. I'm confused. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 13, 2011 Report Share Posted May 13, 2011 Victoria, my gi doc had my samples stained for mast cells. Funny how we hit-or-miss doctors that look vs. don't look! Anyway, I didn't pay much attention to the results(normal) until I read alot about MCAD on here. I looked back and my levels were 18 per high powered field(I think that's the terminology). I looked around the computer and it said that they don't consider it 'high' unless it hits 20. All I know is, I didn't have all this flushing and pooling back when they did the biopsy, so wonder if it is different now. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted May 13, 2011 Author Report Share Posted May 13, 2011 I do believe that the rash can turn into brown spots. And you can also develop freckles from sun damage as an adult. The easiest way to find out is to get the mast cell stain but make sure you have a doctor that knows what they are looking for. My dermatologist told me that TMEP looks very benign and is very often overlooked by skin doctors. Quote Link to comment Share on other sites More sharing options...
bruc Posted May 13, 2011 Report Share Posted May 13, 2011 What are the clinical symptoms associated with MACD? Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 13, 2011 Report Share Posted May 13, 2011 The Mastocytosis Society has good info about the symptoms of both mastocytosis and MCAD- they are essentially the same (the symptoms) Here's a link: http://tmsforac.ipower.com/dev/archives/179 Quote Link to comment Share on other sites More sharing options...
bruc Posted May 13, 2011 Report Share Posted May 13, 2011 Thx! Quote Link to comment Share on other sites More sharing options...
Victoria Posted May 15, 2011 Report Share Posted May 15, 2011 Thanks for the link. I was poking around the site, came across their medical glossary page and found this: AldosteroneA hormone produced by the cortex of the adrenal gland, which is instrumental in the regulation of sodium and potassium reabsorption by the cells of the tubular portion of the kidney.In what manner does Aldosterone pertain to Mast Cell Disorders? I have low Aldosterone, Potassium and Sodium and I currently carry a preliminary diagnosis of Gitelman's Syndrome. Gitelman's is a sodium, magnesium and potassium wasting tubulopathy, and I waste these minerals through my kidneys/urine. I am taking replacement supplements and they've been pretty helpful. I am also on Spironolactone (potassium sparing diuretic), but my nephrologist had me discontinue it for a week to measure how much potassium I'm wasting in my urine without it. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 16, 2011 Report Share Posted May 16, 2011 I thought cutaneous meant that it just affects the skin. If your biopsy is positive for cutaneous mastocytosis, does this mean you also have systemic MCAD? I don't get it. I saw a dermatologist about a month ago - I have a bunch of brown spots - one turned red, raised and itchy so I thought it was worth looking into. She diagnosed it as something else and wouldn't even entertain the conversation of Masto/MCAD with me. I don't know of a Dr. around here who's gonna give me a skin biopsy. You're lucky to have found these Dr's. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 21, 2011 Report Share Posted May 21, 2011 It should be noted that only one study has ever connected Mast cell disorders with POTS and in other unpublished data from other research groups histamines have been normal in pretty much every one tested. Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 21, 2011 Report Share Posted May 21, 2011 When I do a search of mast cell activation and POTS, I literally get hundreds of links to studies connecting the two. Granted, many refer to the Vandy Research by C Shibao, C Arzubiaga, LJ Roberts, S Raj…, BUT the research didn't begin NOR end with them by any means:http://scholar.google.com/scholar?q=mast+cell+activation+postural+orthostatic+tachycardia&hl=en&btnG=Search&as_sdt=1%2C11&as_sdtp=onWhat I also find interesting is the fact that among the DXed mast cell disorder population- almost everyone has POTS/NMH as a symptom. These may be cormorbid conditions, but many researchers believe otherwise. HR & BP variations (worsened by postural changes) are well documented symptoms of mast cell disorders. http://tmsforac.ipower.com/dev/archives/179 Since my docs put me on the MCAD meds, my POTS symptoms are very well controlled unless I am having a reaction to something. I do not appear to be an anomaly. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted January 23, 2013 Report Share Posted January 23, 2013 Can the same doctor checking for mcad check for sfn with the same biopsy? Quote Link to comment Share on other sites More sharing options...
issie Posted January 23, 2013 Report Share Posted January 23, 2013 No, most biopsies for mast cell are done either with a scope down your throat or with a bone biopsy. SFN is checked with biopsies one around your ankle and one on your thigh. At least, that's where mine were.Issie Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 23, 2013 Report Share Posted January 23, 2013 yep you are right issie I am going through all of this right now. I have several different specialists doing different skin biopsies and an oncologist is doing the bone marrow biopsy for the mast cell ..... not fun! so glad to hear how you are improving Issie if anyone can do it, you can .....curious though how are you managing such a restrictive with the mast cell issues and your trigger foods?Bren Quote Link to comment Share on other sites More sharing options...
issie Posted January 23, 2013 Report Share Posted January 23, 2013 glad to hear how you are improving Issie if anyone can do it, you can .....curious though how are you managing such a restrictive with the mast cell issues and your trigger foods?BrenBren,Amazingly well on what I'm doing. I'm working around my methylation issues and surprisingly the diet I'm doing actually addresses some of the issues. It is so funny how my picture of a puzzle is tying all together and one thing puts another thing in place. I'm so thrilled by what I'm learning and doing. I don't find that I'm missing a whole lot and the few things that I'm missing - when I've messed up and had them ---make me so sick ---it's not worth it. So, it comes to a spot in your life that you realize ----you have to do it yourself and if it takes a lifestyle diet change to do it ---so be it.Issie Quote Link to comment Share on other sites More sharing options...
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