My Pics Of Up/cutaneous Masto

[Godsgal]

Hi all, I posted these pics in another place but just in case you didn't see my other topic, I was recently diagnosed with urticaria pigmentosa or cutaneous mastocytosis.

I have a NORMAL tryptase just so everyone knows and it's not high normal. It's just plain normal. And it's been tested multiple times. The only reason I got the skin biopsy is because I has high methyllhistamines in my 24 hour urine and no doctor would diagnose me with a mast cell disorder. PLUS, my twenty billion doctors have "ruled out" mast cell disease so many times and I want everyone to know if you think you have it....get the testing done!! 24 hour urine methyllhistamines is what I got done.

Here's the pics:

https://picasaweb.google.com/103043308031588199236/20110422?authkey=Gv1sRgCKy2ha_W8tzmlgE#

let me know if this link doesn't work.

pic #1 the spot closest to my finger was raised like a mole. The one to the right is flat.

pic #2 this is a small flesh colored bump...hard and raised, like a pimple, but doesn't pop

pic #3 this is my full arm...you can see the scab from the biopsy, and pic #1's spot is to the top right of the scab (about 2 o' clock). Towards the top on the left side of my wrist is pic #2's spot.

I had another spot on my shoulder that I have nothing to compare it to but if was a brownish red mole with very light little capillaries in it.

[issie]

Oh man, I have this look all over me. No dematologist ever commented on it. I just thought I was one of the unlucky ones with lots of stuff on my skin. I do suspect mast cell in me, but didn't realize these (Moles, bumps etc.) could be significant. I'll ask the Mayo doc about it when I see him in May.

[juliegee]

Gosh,

I agree. Your marks look like nothing. You totally warned us. A few things did stand out for me. I'm not sure if you stroked the spots before having the photos takes, but they do exhibit a faint Darrier's sign- ring of redness around them. And, if I'm not mistaken, they are on your inner forearm. That is a spot where NO sun damage should occur even in folks that are not conscientious with sun protection. BUT, the biggest red flag for Jared was her high methylhistamine. This commonly occurs in UP.

Thank you so much for sharing, Jared. You are helping to educate us all.

Hugs-

Julie

[Godsgal]

I do not exhibit a darier sign. No swelling, itching, or redness when stroked. Maybe the pics look like that but it was the way the sun was coming in.

And yes, they look like absolutely nothing. I wanted people to know you can have something look very benign and it actually be something. And the dermatologist actually told me that other dermatologists over look this all the time.

[issie]

Okay, now you're scareing me. Mine don't itch either. I have allot of the brown flat ones on the inside of my arms. I don't get in the sun because of vitiligo (I'll burn in 15 minutes). And in the last few weeks I've gotten a bunch of new ones. Well, my appt. is in a few weeks.

[Godsgal]

Okay, now you're scareing me. Mine don't itch either. I have allot of the brown flat ones on the inside of my arms. I don't get in the sun because of vitiligo (I'll burn in 15 minutes). And in the last few weeks I've gotten a bunch of new ones. Well, my appt. is in a few weeks.

I'm not trying to scare. Just educate. Sometimes I get scared too but from what I understand and as long as God wills it, I'm not gonna die from this. It's just a major inconvenience and needs to be managed. Does that sound right Julie? Sarah?

[Chaos]

Thanks for posting these. It's kind of you to help educate us.

[ramakentesh]

Now the question is - what does it mean. Will histamines improve your orthostatic intolerance? WHich causes which? POTS causing mast cell disorders or vice versa?

[HopeSprings]

How do you guys find Doctors willing to do these unusual tests? The ones I see always look at me like I'm nuts when I bring up rare diseases. What Doctor did the 24 methylhistamine and HOW did you convince him/her to do it? What lab did the test? When I tried to have this done at Quest, they said they didn't check for methylhistamine, only histamine. Also, did you have to wait for a "flush" before starting the urine the collection? Glad you are finally getting some answers.

[Sarah4444]

Now the question is - what does it mean. Will histamines improve your orthostatic intolerance? WHich causes which? POTS causing mast cell disorders or vice versa?

That's exactly my question. So far the anti-histamines have helped me with nausea, diarrhea, anaphylactic symptoms - but I still have severe orthostatic intolerance.

Naomi, I am also have a lot of difficulty finding doctors willing to listen and help me.

[Birdlady]

Hmmm This is very interesting. If I took a picture of my skin right now and put it on here, all of you would freak out. Chelation has actually caused me to develop dermatographic urticaria and hives pretty much all over my body while I am off-round. If I scratch or rub my skin a hive forms. Before chelation though, I never ever once had a hive on my body and I could scratch my skin without any hives forming.

This convinces me more and more every day that toxins of some type may be the source of these issues in some of us.

I guess my biggest question is...even if you get an MCAD (I've seen a lot of this coming up lately) or UP diagnosis , other than taking anti-histamines, what does that really do for you? I'm sort of past the part of gathering up more diagnosis unless they actually mean something. Like Rama said, do the histamine blockers help with orthostatic issues? I can say with certainty, they do nothing for my POTS. I'm just adding all of this as another symptom of a larger issue we haven't uncovered yet. At least that's my opinion.

[sue1234]

Dana, I so agree. Even if I was told I had MCAD, I would get on the meds, and then I would begin to find out WHY mast cells are overreacting! I don't believe in the "syndromes" and "disorders" as actual, root-cause disease, just symptom labels.

[juliegee]

Jared, I am not trying to scare you; just sharing what I have learned. UP usually manifests as skin symptoms, but in some patients it can progress all of the way to life threatening shock, a total collapse of the vascular system. THAT is what you need a very specific DX and treatment plan from a mast cell specialist.

As far as whether or not antihistamines can improve orthostatic symptoms- emphatically YES. Unlike Sarah, with my meds, I am almost normal. If I forget them, the first symptom to return is POTS. I have found that my orthostatic symptoms result from my uncontrolled MCAD. I can still have bad days on meds, but they are far & few between & I can usually pinpoint what set them off. Having this control is a godsend.

What causes what? That's a chicken or the egg question, but I ran across an interesting theory by a fellow, named Lassen. Apparently, he, his wife, and children were all struck by something, CFS- like, within a short period. He devoted decades to solving and unravelling their mystery. He had years of research compiled on a website but it is NO longer available on the web??? As I recall, he thinks it all starts with an infection of some sort, like rickettsia, etc. In some patients with a genetic predisposition, the unrealized infection becomes chronic and drains the body's immune system. At this point, CFS and OI symptoms appear. After months, years even, of constant taxation, the immune system becomes hyper-vigilant and begins to perceive non-threatening stimuli as life threatening and the mast cell activation is born. Lassen calls MCAD multiple chemical sensitivity/MCS. He appears to have made a business out of this I'm guessing this is the same guy: http://www.snowcrest.net/lassen/mcsei.html The old site was very compelling. Lots of flow charts, research, links, etc.

[Victoria]

Thanks soooo much for sharing your photos with us. Knowledge is power.

I have many that look like yours — they started out as red bumps but turned brown later (freckle like).

[Birdlady]

Are there any other reasons why methylhistamine would be elevated? I guess this would be something to consider. I'll have to google this one.

[Sarah4444]

I have tons of round, light brown spots that look an awful lot like the ones in your photos, and they are permanent. However, I am wondering if anyone ever gets some that come and go - I have two right now, and the best way to describe them would be that they look little tiny blisters, but they are hard, not fluid-filled. I was going to show them to the dermatologist, but I don't see him until August and I can tell they are beginning to disappear. Not sure what to do - he is not nearby.

[louloutinks]

thanks for putting the pics up.Things like that help others as some of the pics on the net always depict the worst of the worst.

[Darlene]

I have these bumps too, and have been itching all over my body. I don't know who to contact about these symptoms. The itching is driving me crazy.

[Sarah4444]

I had lots of trouble with itching and it's much better since I started the MACD meds - when it flares up again, Benedryl helps.