Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Intro- Hello Fellow Mast cellers - Diagnosed with TMEP http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1305030143 Message started by Montana on 05/10/11 at 01:22:23

Title: Intro- Hello Fellow Mast cellers - Diagnosed with TMEP
Post by Montana on 05/10/11 at 01:22:23

I was diagnosed with TMEP approx 10 years ago at Wake Forest School of Dermatology.I was diagnosed with biopsy.Have had this problem for approx 20 years.I am 54 years old .It started with 1 spot on top of my foot and eventually all over my body.It is mainly on my torso and top of feet and ankles.I am glad to find this site as this is so rare no Drs. ever see it.I am very active playing competitive tennis and enjoy physical activity.
The main problems I have are itching,sometimes indigestion,sometimes tenderness of sternum,sometimes fatigue.
I was told to live with what I have by Wake Forest Dr. but want to explore all avenues. Thank you and hope you have a good day

Title: Re: Intro- Hello Fellow Mast cellers - Diagnosed with TMEP
Post by DeborahW, Founder on 05/10/11 at 02:32:46

Welcome! First question I have is are you taking any meds at all? Sounds like your symptoms would be an easy fix with the right meds.

Title: Re: Intro- Hello Fellow Mast cellers - Diagnosed with TMEP
Post by Riverwn on 05/10/11 at 04:51:16

Welcome to the Board, Montana!!
We are like a Family here, supporting each other and finding answers to our questions--and we always have room for one more :)

You need to know that with that positive biospy, you have the disease Mastocytosis.. and you need a DR who is expert in treating those patients. Can you tell us where you live? We might have a suggestion as DR for you. You definitely need some meds to prevent what youre feeling now.. tell us a bit more about you and what you do take.
Welcome once again!
Ramona

Title: Re: Intro- Hello Fellow Mast cellers - Diagnosed with TMEP
Post by Montana on 05/11/11 at 03:24:30

I am taking no meds.I would be very interested in a dr who has experience with my condition

Title: Re: Intro- Hello Fellow Mast cellers - Diagnosed with TMEP
Post by Montana on 05/11/11 at 03:25:23

I live in Charlotte,NC

Title: Re: Intro- Hello Fellow Mast cellers - Diagnosed with TMEP
Post by DeborahW, Founder on 05/11/11 at 04:33:21

Can't help you with any doc suggestions in NC, but someone else might have some. Since you have minimal symptoms, it would be easy for you to try the typical meds that we all take. The basic ones are all over the counter! For example, I take:

7 am
300 zantac
180 allegra

4 pm
300 mg zantac
10 mg zyrtec

I bet that if you tried some allegra and zyrtec, you might find that your symptoms vanish. Besides the spots, you simply don't have many systemic symptoms -- which is GREAT! So, if you were to try the basic ones, you might be very pleasantly surprised. Just fyi: we take the zantac for GI issues (stomach pain, diarrhea, or vomiting) anbd the allegra and zyrtec for itchiness, rashes, hives, nausea, brain fog, and more.

Title: Re: Intro- Hello Fellow Mast cellers - Diagnosed with TMEP
Post by missybean on 05/11/11 at 05:17:08

Hello my fellow TMEP'er! I have TMEP. There is a few more of us on here and hopefully they will respond as well. I was diagnosed a few months ago, after a couple of years of seeing different doctors.
My symptoms come and go and sometimes I get them one and a time and sometimes I get many of them at once. Joint/bone and muscle pain, fatigue, hives, GI problems, sinus troubles, flushing. They are definetly better since put on proper meds and the biggest change for me has been diet. Eating a low histamine diet has made a huge change. Also knowing what your triggers are, for me those triggers are mostly food. I can't have gluten, dairy, soy, eggs, grapes, oranges, peanuts or any kind of dried fruit. Oh and NO alcohol for me. Here are the meds I take.
AM- zyrtec 10mg
Zantac-300mg
Cromoyln Soduim- 200mg
Thyriod meds
Fibro meds

Lunch-cromolyn soduim 200mg

PM- zantac-300mg
Fibro meds
cromoyln soduim 200mg

bedtime- cromoyln soduim 200mg
hydroxyzine- 50mg

Liquid benadryl and extra zyrtec as needed

Yes, a lot of meds. But if it helps to keep those mast cells at bay and possibly help from getting more spots I will take them. I hate have to take all these meds but they do help.
Do you have certain triggers?

Melissa

Title: Re: Intro- Hello Fellow Mast cellers - Diagnosed with TMEP
Post by Lisa on 05/14/11 at 03:28:17

The closest doctors to you would be Dr. Lawrence Schwartz from Richmond, VA and Dr. Afrin who is in South Carolina

Lisa

Title: Re: Intro- Hello Fellow Mast cellers - Diagnosed with TMEP
Post by Montana on 05/16/11 at 01:48:54

Thank you very much.I am going to get an appointment with Dr. Afrin
Have a good week :)