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New with TMEP questions (Read 6568 times)
Bfrey
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New with TMEP questions
10/13/11 at 10:03:48
 
Hello everyone!  I am so grateful for this forum.  
I am 53 years old and have had a pinpoint, non-itching rash on my stomach for at least a year.  I tried every OTC cream and nothing helped.  I saw my family dr. who prescribed Rx Cortisone which also did not help.  2 weeks ago I went to the dermatologist who was almost sure it was TMEP.  She has seen it just a handful of times in the past 10 years.  She took a biopsy and I just got the results today.  The results said uticaria tissue reaction (hives)and possible TMEP.  There were mast cells present but not enough for a definite TMEP dx. The dermatologist said she does not belive the hives dx as clinically my rash does not look or act like hives (does not come and go, does not itch, certainly is not welts; most of the spots can't even be felt). I had read about a special method to take the biopsy to get accurate results, but didn't remember details, and the dermatologist had no idea what I was talking about.  Upon further reading it was something about where the lidocaine was to be administered to avoid a false negative.  The dr. prescribed clobetasol .05% and said if it is TMEP that the clobetasol will clear it up.  She said if it clears up, we know it is TMEP that was confined to the skin and not to be concerned anymore.  She also said if the rash clears up but then returns when I discontinue the cream, I will need another biopsy.  I'm not sure about her thinking as I have read that no creams clear up TMEP, and the pharmacist told me clobeasol is used for many skin conditions.  I do not have many of the serious side effects that I have read about on this forum.  I do have mild esophagitis and get scoped every few years for it as my dad died from esophageal cancer.  I had an EGD prior to seeing the dermatologist and it again showed mild esophagitis. I have been on Xantac for a few years now and recently upped the dose to 300 mg. twice a day as per my GI dr.  I called him to ask if the biopsy showed anything re: mast cells and he said there were mast cells present but nothing out of the ordinary, and he would have the technician look at the sample again.  I had a complete hysterectomy done in May 2010 (no rash at that time), including ovary removal.  Several months after that I started having hot flashes and bone/joint pain, sometimes severe.  I assumed they were due to the hysterectomy, alhtough generally when ovaries are out the hot flashes start right away or within a few weeks and it took months for mine to start. Also assuming it was the hysterectomy causing the bone pain, I started taking black cohash and fish oil, and the pain is not nearly as bad.  So.....does the group think my dermatologist is following the right course?  I'm not feeling too confident with her right now.  I asked today if she still thinks it TMEP and said said "Not as much as I did before we got the biopsy results."  I have a follow-up with her in 3 weeks.  In my area (near Allentown PA) it takes months to get in to see a dermatologist if you are not already a patient.  I would be happy to travel to Philadelphia or NYC if this group thinks I need a second opinion and if it would not take 6 months to see someone.  Or are there other suggestions?  Thanks for reading this and I do appreciate any input!
Beverly
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Lisa
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Re: New with TMEP questions
Reply #1 - 10/16/11 at 13:13:48
 
Sorry Beverly for not getting on here earlier!   I've not been online for a few days - and I'm only now taking a check on things.  

It doesn't sound to me like your biopsies were done properly,  but it also doesn't sound as though your doctor is too on top of it.   I recommend your going elsewhere for Allentown is too small and you're not going to find anyone there who really knows masto.  TMEP is quite rare and so I find it hard for your doctor to have seen as many cases as she's claiming.  I think you need to seek out higher authorities, Bev.

I hope this helps!

Lisa

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Donīt forget, there is so much more to life than being sick!
 
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Bfrey
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Re: New with TMEP questions
Reply #2 - 10/17/11 at 05:06:20
 
Thanks for your reply. Lisa.  I agree my dermatologist is not on top of things.  I've been using the clobetasol for 3 days now and the rash is almost gone.  I have a 2nd opinion scheduled with Stephen Purcell (also from Allentown but I am going to his Pottsville office as I can get in there much sooner) on Wed, but if the rash is gone I will wait.  If it comes back I will want to see someone really good.  Dr. Purcell has a great reputation, but if there is someone in NYC or Philly, I would be happy to go that route.  I looked at the post of recommened doctors for mast disorders, and didn't see anyone listed in those towns.  Do you think I'd be ok with Dr. Purcell (I know you don't know anything about him specifically)?  If not, how do I find someone in NYC or Philadelphia?  Many thanks...I was a little discouraged until I got your message Smiley
Beverly
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Joan
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Re: New with TMEP questions
Reply #3 - 10/17/11 at 10:50:47
 
Hi Beverly,

  If no one else posts a good dermatologist's name here, you might want to check with a University med. school dermatology department in your area.  Because they teach and are regional centers for more complicated cases, they've often seen more unusual problems than docs in smaller locales.  You can even call the dermatology department and ask to see someone who has had experience with TMEP.  

   The cream your doctor gave you is a steroid cream, and it might clear up a rash caused by a number of problems.  I don't think clearing up indicates what it might be.

  Have you tried any H1 antihistamines, such as Zyrtec or Allegra?  If you do, and it gives you relief from the pain, you might want to be worked up for allergies and mast cell disorders.

  Good luck and let us know how you're doing!
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Re: New with TMEP questions
Reply #4 - 10/18/11 at 10:08:05
 
Thank you, Joan--that is a great idea.  I think the Univ. of Pa Hospital in Philadelphia is a teaching hospital; I'll check that out.  After 5 days on the clobetasol the rash is completely gone.  So now it is a waiting game to see if it comes back.  If so, I'll ask her specifically for dr. recommendations in Philadelphia or NYC, and if I don't get any ideas will look for a teaching hospital.  
Thanks again.
Bev
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missybean
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Re: New with TMEP questions
Reply #5 - 11/16/11 at 11:20:31
 
Hi Bev,
I have TMEP, and the doctor who did my biopsy told me it was just telangiectasia's. It wasn't until later when I started getting new spots and saw a new dermatologist and had my path report sent to her which had a differential diagnoses of TMEP was my diagnoses given. The other doc never said anything about it. From the information I have found on TMEP which there isn't a whole lot out there.......you don't have to have a large amount of mast cells, I guess it is the presence of spindle shaped cells. Also I have read that most of the time TMEP is given as a differential diagnoses and clinical correlation is necessary. So all those stomach problems and joint and muscle pain probably are related to the TMEP, I have all those things too and many TMEP spots are different.......some look like freckles or moles and some are red splotches and some are pin pricks. I tried clobetosole and while it removed some redness my red splotches did not go away. I have been told the TMEP spots will never go away. I posted some info on TMEP I gathered....I believe it is under the general section and is titled TMEP info, check it out if you get a chance. Good luck I hope you get some answers.
Melissa
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Re: New with TMEP questions
Reply #6 - 11/18/11 at 04:26:45
 
Missybean;
Do your spots come on when youve been triggered(known or unknown)?
I have all the flaaring and inflammation etc, but sometimes just one or another type of "spots". They leave little brown "freckles" as a reminder  Sad ...  Never heard of Clobetasol; sounds like it just temporarily relieves the spots. Huh
Sometimes a lesion will leave a small scar. Its frustrating when those spots suddenly start appearing out of nowhere, and you cant for the life of you figure out what triggered them  Angry !
Wish we had a "spot remover"!
lori
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Re: New with TMEP questions
Reply #7 - 11/20/11 at 04:38:32
 
Lori, most of my spots appear when I'm triggered by something which is daily. The majority of my spots are red splotches(telaniectasia's) dialated blood vessels....they get real red and angry and sometimes they can even have a hint of purplish color to them when they get real bad. So those spots fade to where they are very faint and then when I trigger they just get red again, but always in the same spot. The others spots look like little pin pricks that start red and then turn brown with-in a week and they don't ever go away. Some of the other spots are just groups spatches of hyperpigmentation that look like freckles that appear overnight. Oh and some of the telaniectasia spots that don't seem to flare up anymore have left scars too. Kind of like mini craters. Are your spots mostly pin pricks?
Melissa
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Re: New with TMEP questions
Reply #8 - 11/21/11 at 06:51:14
 
Missybean;
We sound a lot alike ! I get all of those too- you left out the red spots circled by white rings... Cheesy My spots are also a combo at times. Its crazy.
I cant even guess at the triggers sometimes. It's like "NOW what did I eat/touch/breathe?" I was joking with Deb about how we have a lot in common with vampires, as far as going out in daylight & being "spotted"-pardon the pun! Grin When its been REALLY bad- people look at me as if Im a leper or something. Embarrassed  I have quite a few new freckles/brown dots. I went for a massage the other day (dr. said I could) & the massage therapist said what nice skin I had ! Of course it was dark in there & no spots at the time... Roll Eyes It helps to have a sense of humor about about it, and to know;
we are not alone,
lori
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Re: New with TMEP questions
Reply #9 - 11/22/11 at 05:24:22
 
Yes, circles with white rings. Lol! Two years ago I had hardly any freckle mole spots. I mean like less than 5 on my whole body. I still don't have much to complain about compared to most people with out masto they still have more moles than I do. It's the telangiectasia's that bother me and that constant red sunburn look on my chest.
Melissa
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