After a couple of years of watching a few patches of skin change, I am going back to my doctor to request a biopsy to check for TMEP.

I seem to have a variety of spots and other symptoms that people with TMEP here on the forum have reported:

• areas on my rib cage that have gradually darkened from faint spider-like veins to a blossoming network of redder veins with a bunch of pink-red dots over them

• pink freckle-size dots on my abdomen (no veins under them)

• tons of bright red pinprick dots on my thighs and upper arms that look like petechiae but then darken over time and never go away (could be because of heparin and not TMEP?)

• new patches of splotchy redness that come and go on my face and that itch (does TMEP ever itch? these could be hives)

So, I need to fortify myself for trying to convince my doctor that I need a biopsy.  (Why, oh why do I always feel anxious about going to the doctor?!  It is an uphill battle sometimes.)

I can take along studies that people like missybean have posted here (thanks, Melissa!).  The challenge is that there are only a handful of photos online showing TMEP and those seem to all be of the same rash pattern, however I know from peoples' comment on here that the rash can vary in appearance.  

So, I am bracing myself for the possibility that my doctor here will say that I don't need a biopsy because my spots don't fit the classic TMEP profile.  My regular doctor, who is close to home, works in consultation with a mast cell specialist located in another country.  When I traveled to see the specialist 1.5 years ago, he diagnosed me with MCAS.  He looked at my small veins and a few petechiae areas then and said that is was not TMEP.  My spots and veins have gotten worse since then.  But, I really don't want to travel again to go see him if I can possibly help it.  

I am stressing a bit about this, and also that there is a very specialized protocol for the lab to make the diagnosis.  If it comes back negative, I will still wonder if maybe they did not handle the sample properly.

I go back and forth in thinking that I should pursue this when I already have an MCAS diagnosis.  I imagine my treatment would be the same. However, if I do have TMEP it means that my mast cells are actually proliferating, versus behaving badly with MCAS.  

Anyway, I'm just sharing/venting here about hoping that I can convince my regular doctor to order the biopsy.  If I can, I would love to get a couple of samples -- one of the vein-y rash and one of the petechiae-like spots.  Wish me luck!

Larken

Hi Starfish,

Thanks so much for posting a photo.  For some reason I am not able to view or download it.  Would it be possible to PM it over to me?  I am definitely curious to see.

Larken