AllAboutPeace Posted September 29, 2012 Report Share Posted September 29, 2012 Since the onset of Pots, I've had some skin issues that I've never had before. When I was seeing a surgeon a few days ago, he told me that I have Dermatographia (http://www.mayoclini...graphia/DS00755 ). So, I know it's nothing to worry about, but when I look at all of the things that have come up, I'm just curious if this is a Pots weirdness or something else.So:- dermatographia- cold urticaria (hives that last for over a week from being cold)- in the past few weeks, I've noticed that I have some small circular spots on my upper arms/shoulders that are lacking pigment- when sitting in direct sunlight with legs covered the entire skin area will turn red and inflammed with large white spots (looks like someone put a stencil over my legs with circles in it and sprayed it white).- a few brown patches on the side of my abdomen- I also have had excema for many years, but for the most part it is seasonal (worse in cold weather)The doc also was quite adament that I tell the dentist that I have cold urticaria because that is definitely something he should be aware of. I was pretty foggy brained when I was talking with him, so I really didn't get why he was so concerned. He also said that I should alert anyone at the hospital when having procedures done. Has anyone else been told this??Is it possible that Pots is causing these various inflammations/ issues? Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted September 29, 2012 Report Share Posted September 29, 2012 Have you looked into mast Cell issues? I thought dematographia was something they look for ?!?! I might be wrong though Quote Link to comment Share on other sites More sharing options...
westernmass Posted September 29, 2012 Report Share Posted September 29, 2012 I have the small kind of circles/patches on my upper shoulders that seem to have lost pigment. It's very subtle but I never had it before.I wonder if this Mast cell related? My dr just checked my tryptase levels...My scalp is also itchy and has either pimples or little scabs- hard to tell through my hair. They aren't too noticeable but they are annoying! Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted September 30, 2012 Report Share Posted September 30, 2012 This sounds very much like a mast-cell issue. I have many of the same symptoms (particularly the temp sensitivity and dermatographia), including eczema since I was 15, and was told these are classic signs. Quote Link to comment Share on other sites More sharing options...
leydengs Posted September 30, 2012 Report Share Posted September 30, 2012 Holy crap, have the same thing!!! I have it on my upper back, shoulders and neck. I tan so the spots look white (no pigment). I was told it was a fungus or build up of protein on the skin but no fungal meds have worked. The heat makes mine worse also. The summer I will have a lot more spots but in the winter some will go away. I hate it!! It looks like I had a bad sunburn and I'm pealing so I don't get a lot of questions. If I itch them (sometimes they itch) then I can see dry flaky skin (eczema cream doesn't work either). Quote Link to comment Share on other sites More sharing options...
leydengs Posted September 30, 2012 Report Share Posted September 30, 2012 NMPotsie - Is there a cure/treatment for it? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted September 30, 2012 Report Share Posted September 30, 2012 When my son saw Dr Afrin (mast cell specialist) the first thing he did was scratch my son's back. Dermatograhia is a sign of mast cell. The scratches on his back stayed there for quite a while. You might want to check into mast cell activation syndrome. Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted September 30, 2012 Report Share Posted September 30, 2012 Leydengs, I think what your talking about, the white patches of missing pigment is pretty common when you have a fungal infection or ezcema something that disrupts the pigment and will eventually "grow out" with new pigmented cells. That is how the pediatrician explained it to me, my daughter had dry skin patches or ezcema on her face, then we went to the beach and she has had them for months now! They should fade with time.. I don't think they're concerning. Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted September 30, 2012 Report Share Posted September 30, 2012 leydengs they are putting me on the "mayo cocktail" for mcas. So far it consists of 3 zyrtec/day, 4 sprays of nasal fluticasone, a saline rinse (like a neti pot) and "something for your gut" like Zantac (I'm waiting for the doc to call me back on that; should be by Tuesday). It's about controlling the histamines, both H1 and H2 so that's why the zyrtec/zantac combo. I was already taking a similar treatment but with only one zyrtec/zantac and I believe it helped. As soon as I got off my meds to prep for the testing at Mayo I had some serious reactions.The white stuff is a pigment issue and nothing to worry about. I have "scars" from when I had severe eczema at 15, and they are still all white and haven't restored their color. Be careful with the fungal meds; I was told initially I had this and they had me apply lotrimin directly on my eczema. It burned my skin severely, so badly that it was "weeping" through my clothes. The burns itched, I scratched, and I ended up with a nasty staph infection on my skin. Very, very terrible. Staph on our skin (those with atopic dermatitis) is very common and you have to watch or it will get bad. I've had MRSA 3 times in 2 years. I use mupirocin/bactroban anytime I get any sort of hives/itching.For my eczema, this is what works: antihistamines, washing with Eucerin calming body wash (no soap!), a coating of Eucerin cream (the stuff that is like crisco, not the lotion), bactroban prn, and a course of oral prednisone when really bad. Prednisone is often the only thing that will get a flare under control for me, which stinks because the side effects since I got Pots are awful. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted September 30, 2012 Report Share Posted September 30, 2012 Leydengs,What you are describing sounds like tinea versicolor. It is a fungus and mighty persistent too. I get it on my chest and back of the neck, but even after using nizoral shampoo, it never fully goes away. It can be itchy, but not usually. Depending upon your skin tone it can either make your skin pigment lighter or darker. Mine is darker than my skin tone because I'm so pale and can't go out in the sun because of my heat intolerance.I actually have a really bad flare up at the moment. Probably the worst ever! Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted October 1, 2012 Author Report Share Posted October 1, 2012 Thank you everyone for your input - I usually skim over the Mast Cell conversations because I didn't feel like it applied to me...It seems like mast cell issues are becoming really common lately. I wonder what that means. It seems for me, at least, the Pots issues came first, but is it assumed that mast cell issues are causing Pots?? For those of you on medications for it, do you see an improvement in Pots symptoms or is it just a totally separate issue?Is there someone specific you should see for these kinds of issues or do you basically have to see a mast cell specialist? Quote Link to comment Share on other sites More sharing options...
leydengs Posted October 1, 2012 Report Share Posted October 1, 2012 Thanks Dana, that's always what I thought it was and yes no matter what treatment I try it never goes away!! Quote Link to comment Share on other sites More sharing options...
Christy_D Posted October 1, 2012 Report Share Posted October 1, 2012 I didn't think mast cell was going to be an issue with my son either, but a member on here encouraged me to check into it. I put it off for over a year, and sure enough he does have MCAS. You do need to see a mast cell specialist, it is even less known by doctors than POTS. Dr Afrin told us POTS is a symptom from MCAS. We haven't found the right medication to help my son yet, but there is a very long list of medications to try.Doxepin is a medication that is prescribed for POTS and MCAS. When my son was first diagnosed with POTS he was put on Doxepin. At a very high dose(175mg), he saw great improvement but it was short lived(6weeks).He is still on Doxepin because when we took him off of it, he felt even worse.Christy Quote Link to comment Share on other sites More sharing options...
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