Mast Cell Disorders Forum

Josie

Ex Member

new spots
03/17/11 at 05:39:07

Hi All

I wanted to ask opinion on my varying spots . I ahve red dots on my chest and tummy , which are increasing but not itchy .

I have more freckles on my arms although I have not seen the sun for 2 yrs . They are light brown and urticate when i am reacting , but dont if I rub them gently for the daniers sign of UP in between reactions .

I have a light rash on my upper thighs which is turning from like a sweat rash to brown spots gradually , again no dariers sign .

I have had a blood blister ( single ) under my right boob for as long as I can remember . It is now dark brown .

I am also getting more moles ??? on my upper arm by my tattoo on my right upper arm .

I am now on enough antihistamines that I can't write on my skin today Wink

.

Any thoughts ??
Josie xxxxxxxx

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missybean

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Re: new spots
Reply #1 - 03/17/11 at 06:14:05

Josie, this sounds so much like what is happening to me. The mole/freckle looking spots are probably TMEP. TMEP doesn't produce dariers sign most of the time, in some people it does. I also get many spots under my boobs that like like blood blisters, usually they are petechiae and go away in about 5 days, but I also get some that look like a blood blister and then a day or two later they are brown and they haven't gone away.
All the freckle/moles my derm told are TMEP. I started getting tons overnight, I would wake up and there would be 10 more, the next day another five, I'm rarely in the sun. Didn't make since. They are in areas that don't even see the sun. You should have them biopsied.

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Sandi

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Re: new spots
Reply #2 - 03/17/11 at 19:35:48

Missyb! Thanks for mentioning the TMEP, over the years I ruled out UP, I guess the photos I saw in the beginning were individuals with major red spots everywhere and I ruled me out as up or TMEP. I have brown spots all over the place, as you've described they keep on coming, DH noticed years ago, more and more freckles/moles/skin tags/brown spots. I've seen a few photos where I'm like hey! Thats my skin! So I started looking up TMEP tonight, gosh I wish there were more photos. I just got slammed with to virus' while looking at medical photos of tmep! Thanks for triggering me to look again. I have so many veins too! Dont get the blood blister look though.

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missybean

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Re: new spots
Reply #3 - 03/18/11 at 04:25:41

TMEP spots very so much I'm learning, I have several different looking spots, I have the freckle/mole like spots, the spots that's a area of hyperpigmentation-they aren't that dark either. Then I have the more red spots that are veiny and red and urticate when rubbed, rarely itch except when I'm hot or really got into something that triggers me. Really, when I look on the web at the pictures they are so extreme and mine don't look as bad as those. Sandi- you should have yours biopsied too.
Melissa

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Deb

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Re: new spots
Reply #4 - 09/07/11 at 16:52:18

Hi! I'm new and still don't have a diagnosis. My doctor schedules 6 months out so this may take a while.
On my first appointment he mentioned he suspected masto or some histamine problem that is not allergies.
So I've been researching and decided it has to be a systemic mast cell disorder for 4 of us in my family.
Now suddenly in the last two day it has become cutaneous too.
I guess that is good so that they will have something to check but this is scary the way I have so many tiny raised dot size brown spots on my torso overnight. Plus I have one dark, 3mm, raised, stinging, itchy spot on my back.
Since these are new for me I'm researching but I have a few questions.
Do you find that they go away or are they permanent?
Since irritating it causes degranulation of the mast cells, will that make it stop itching and go away sooner or at all? (Though it's very tender to touch)
Some of my spots get the Darier sign and some don't. Is that normal or just an early stage?
Are some types of spots more likely to go away than others?
Is there anything you suggest to prevent them if I cannot get the doctors to pay attention to this anytime soon? (my next appointment is 6 weeks away)
Does anyone recommend a doctor near southeastern Virginia or within a couple hundred miles of here that specializes in mast cell disorders?
Thank you,
Deb

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missybean Mentor Offline I Love YaBB 2! Posts: 439 Washington	Re: new spots Reply #5 - 09/08/11 at 06:32:42 Deb- check out a post titled TMEP info it is in the General section, I think it is in the 3rd page. It describes TMEP a little more. Hard to find info on it. Melissa
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Ardyth

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Re: new spots
Reply #6 - 09/08/11 at 15:49:00

What is TMPD? I have freckles that suddenly appeared on my body thirty years ago. One day, suddenly all over my legs. Since that day, I get more and more. Also told I have seborric keratosis. this is supposed to explain the numerous strange growths I've had. A doctor looking for masto did not think any of my spots were masto. So this is interesting to me.

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missybean

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Re: new spots
Reply #7 - 09/09/11 at 05:19:35

TMEP tands for Telangiectasia macularis eruptiva perstans. It is rare form of mastocytosis. It is a sub type of UP (Urticaria Pigmentosa).
My TMEP spots vary, some look like freckles/moles and some are just telangiectasias which are red looking splotches that become red and angry when I'm exposed to a trigger and on some days are really faint. I also have patches of hyperpigmentation that would just appear over night in the dead of winter when I haven't had sun exposure. My advise is see a dermatologist and get a biopsy. Really push for it. You have a right to get an answer. Call around and find a dermatologist who has treated mastocytosis patients or at least has some knowledge. I have come across many doctors who are familiar with mastocytosis but have never heard of TMEP so read the info and print it out and take it with, learn as much as you can about it before you go in. Make sure you go to the general section and click on TMEP info....it's on the 3rd page.
Here is one picture of a TMEP rash. Click on this link.
Just so you know I saw probably 4 dermatologist before one biopsied it, I have been told it was ketotosis pilaris, ezcema, heat hives, dermatitis herpetaformis and so on and so on.
http://dermatology.cdlib.org/DOJvol6num1/NYUcases/tmep/tmep.html

Melissa

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iamnotalone

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Re: new spots
Reply #8 - 09/09/11 at 13:34:38

Melissa; my allergist asked me if I had photos he could show other Dr.s when he discussed my case. When I developed the pics Id taken- it amazed me to see how varied the spots looked at different times over the last few months ! I mean I knew they looked different at times but to actually see them all at once was weird. I am slowly learning from your posts, and tho this disease sucks (no other way to put it) I just want to say thanks for helping those of us who are still new to this, since its not like the docs give us a pamphlet of info or anything with the diagnosis.
wishing you well !
lori

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missybean Mentor Offline I Love YaBB 2! Posts: 439 Washington	Re: new spots Reply #9 - 09/09/11 at 13:49:34 Lori- Thanks, I'm still learning so much too. I learned a lot from the girls on here too. It IS weird how the spots change over time! I'm glad your doctor is interested and is discussing with other doctors. You already had your skin biopsy right? It hard to remember, sorry. I will blame brain fog! Lol! Melissa
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Patricia Guiding Light Offline Posts: 164 Washington, dc	Re: new spots Reply #10 - 09/10/11 at 09:58:59 Deb- you asked for a Dr in southern Va isnt Dr Schwartz at U Richmond? Hes apparently a Masto Grandfather and an early researcher.
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iamnotalone

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Re: new spots
Reply #11 - 09/11/11 at 16:15:28

LOL Melissa !
I blame EVERYTHING on brain fog now Cheesy

! Yes, The skin biopsy was how I was diagnosed w TMEP. A smart dermatologist who was filling in didnt blow off my "weird spots"-like her partner. Id had chronic hives, then caught scabies at work, then this. My allergy/immuno isnt like some doctors who dont want to share info because he might lose the office visit $. He immediately called me in a dbl. Epi-pen script when I called & told him what the Derm said.They refused to send him my lab info & said only my fam. doc. needed the report. SHE had never even heard of it and had to look it up ! I had faxed them a release form and they STILL wouldnt share ! Luckily my allergist is outve the same hospital and got my labs via the website. He suggested last time I saw him I may want to have the Bone marrow biopsy done. Have you had it done ? What do they do differently if its systemic ? Gosh theres sooo much to learn still... Shocked

Be well,
lori

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Lisa

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Re: new spots
Reply #12 - 09/12/11 at 05:34:25

Deb wrote on 09/07/11 at 16:52:18:

Does anyone recommend a doctor near southeastern Virginia or within a couple hundred miles of here that specializes in mast cell disorders?
Thank you,
Deb

Hi Deb, welcome to the forum! You are in luck for you have a mastocytosis authority in Richmond. He´s at VCU. Here is his contact information. Give a call to his secretary and set up an appointment. He knows the skin lesions well and can easily check them out and if in any doubt he will have them biopsied and tell you exactly how to test for it. He´s the very best doctor to have your tryptase measured as well and many doctors around the States send their tests to him!

Lawrence B. Schwartz, M.D., Ph.D.
P.O. Box 980263
Richmond, Virginia 23298-0263
Phone: (804) 828-9685
E-mail: lschwart@vcu.edu

I see a significant number of patients with definitive or possible
mast cell disorders, and am delighted to continue to do so. Prior
workup information is important for me to have. The tel # for an appt
is 804-628-4432.

I hope this helps!

Lisa

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Don´t forget, there is so much more to life than being sick!

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