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-   -   New and unsure (http://birthmark.org/board/showthread.php?t=4115)

sweetkandy 10-08-2010 04:23 AM

New and unsure
 
My name is Nikki, I'm a 26 year old and I have no idea if I am in the proper place. I have not met anyone in my life who can definitively tell me what is on my body. I have what I have always been told is a birthmark on my left arm, and part of the left side of my chest, side and back. I was born with it, though I have recently been told that when I was little my birthmark was only on my arm and that it was quite a bit lighter in color. My birthmark has always been interesting to me because I have never known anyone else with one just like mine. It is normally red in color when I am warm, but as my body gets colder, it turns purple and will eventually turn almost a midnight blue. When pressure is placed upon my birthmark, at the point where the pressure is concentrated the birthmark disappears almost completely, and it's almost a gradient fade as you move away from the highest concentration of pressure until you reach an area with no pressure where the birthmark appears normal. I have also recently developed two blister-looking growths that while forming were severely tender and would bleed profusely if bumped, touched, or anything really. I am looking for answers because having this birthmark has caused a great deal of stress and emotional distress, and has also made it rather difficult to acquire a job without having friends in positions to vouch for me. I would really like to know what I have been living with for 26 years, and if in fact it truly is a birthmark in the traditional sense of birthmarks. Thank you for any information in advance.
Have a wonderful day.
-N

missy 10-08-2010 11:40 AM

Where are you located? While this *sounds* like a port wine stain, you need to be diagnosed by someone that is a specialist.

And, welcome!!!

Missy

sweetkandy 10-08-2010 03:03 PM

I am currently in Kentucky, USA though I'm about 2 minutes from Tennessee as well. My mother and I have been told by different doctors that it is not a port wine stain, however, I've had doctors asking me what it is every time I've seen one for the eight years or so. Though none of them were specialists.

missy 10-08-2010 08:55 PM

In that case, go to http://birthmark.org/experts.php and ask Dr. Nelson. Make sure you send a photo of the mark and see if he can help you determine what it is exactly.

Missy

sweetkandy 10-08-2010 08:59 PM

okay. thank you.
-N

LizH 10-13-2010 04:44 AM

Hi!
This website is a great resource- I'm sure you'll find help here.

jpuritz 09-02-2011 01:54 AM

that sounds a lot like mine- started out light, turned darker a bit as I got older. Becomes purple when cold, a bit lighter when really sick, whitens with pressure, and a bump that occasionally really enjoys bleeding at the wrong time. They said mine was a port wine stain, so I'd say there's a good chance that's what you have.

When you ask, make sure to tell me if it isn't one, because then I need to get a second opinion too, I think.

sweetkandy 09-02-2011 05:59 PM

response i had gotten from Dr. Nelson
 
okay, i emailed, including a photo of my birthmark, the Ask the Port Wine Stain Expert on the website and the response i received was as follows:

"Based on the photograph you forwarded to the Vascular Birthmarks Foundation, I would be suspicious that you have underlying Klippel Trenaunay Syndrome (KTS). I would recommend that your primary care physician order a MRI with gadolinium contrast examination of your left upper extremity to rule out underlying KTS."

I have yet to have said test done, but have googled the syndrome, and though there is little to find about it, this may have merit in my case. as for your second opinion, i'd go with what they are telling you. because while i've been told it's not a port wine stain, i've not been told it's anything else either.


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