tmep

• By jetclark
• Reply 3704342
• January 14, 2013 at 11:05 am
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if anyone has any suggestions in helping me with my tmep or if anyone would like to compare our history to each other because for yrs i thought this was caused from my life style and no one knows what its from . so maybe if we compare notes .

• By angiehope
• Reply 3709620
• January 15, 2013 at 10:52 pm
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Hi, Jet. :-) I had a biopsy of a rash that occurs mainly on my chest, shoulders and neck. That was back in 2008 or so. They said it was TMEP and "nothing to worry about." Since then, I've done my own research to find out what this TMEP was, and horrified to see what mastocytosis was and how all my symptoms matched. I've had IBS since young adulthood and terrible sinus problems the last 10 years (and got worse after losing everything in Katrina and being exposed to all that Black Mold). Nowadays, I deal with rheumatoid arthristis as well, though one of my doctors thinks my knee problems are from masto and not RA (though I did test positive for RA in 2008). I don't have health insurance, so I haven't had any other testing done. I did have TWO allergy testings before my TMEP diagnosis and I had zero allergies, however, about 10 years ago I was found to be instantly allergic to morphine administered after a hysterectomy.
I've lived the last 10 years or so with weird, seemingly unrelated symptoms - the IBS, rash (when overheated or when I'm getting sick with a bad sinus infection, though there IS no infection; just my body being crazy), bone pain, swelling of joints, unable to sleep, and now, maigraines.
It sucks. :-)

• By beingcelestial
• Reply 3709758
• January 16, 2013 at 12:01 am
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girls, look into NETs. they can bring on many of the symptoms that you are experiencing. i had one w/o typical symptoms but i have learned much about them.

• By angiehope
• Reply 3709853
• January 16, 2013 at 1:26 am
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NETs?

• By beingcelestial
• Reply 3710156
• January 16, 2013 at 7:50 am
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neuroendocrine tumors that can be tiny or large. they occur mostly in the abdomen but can be in the lungs. they cause flushing, IBS, IBD, weight gain or loss, GERD, diarrhea, constipation, asthma and other misdiagnosed symptoms. some doctors treat the symptoms without discovering the NET. they think they are treating patients for rosecea, lupus, allergies, etc. the flushing can be like a rash or make the skin look red, pink or purple.

tests to determine NETs include colonoscopy, endoscopy, abdominal MRI and tri-phase CT scan. blood work includes CgA, norepinephrine, gastrin and others.

i learned about NETs b/c a tiny 2mm one was found during an endoscopy.

• By jetclark
• Reply 3715247 · In reply to 3709620 by angiehope
• January 17, 2013 at 6:07 pm
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Got a call from the DR. Today ( dermatoligist ) he want to write an article in the medical journal about my condition . I wish they would ddo a study on our condition .

• By josie75
• Reply 3718505
• January 18, 2013 at 7:31 pm
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hi hun x have you had a bone marrow biopsy ? what is your tryptase now ? jose

• By so8up
• Reply 3720471
• January 19, 2013 at 1:46 pm
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@ jetclark
just wondering what the name of the drug you were given? = " finally the dermatologist sent me to the cancer center to try a drug they use on people with leukemia & stomach tumors . after a month or two my stomach started feeling better." I'm wondering if it was gleevec, by any chance. I've got a 2nd bone marrow biopsy schedule for 1/28 to chk for the flip & ckit #s to see if I'm a candidate for that.

• By jetclark
• Reply 3722142 · In reply to 3720471 by so8up
• January 20, 2013 at 8:29 am
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yes the med is called GLEEVEC . i take 400mg at bed time . thank god i have medical ins. because i would never be able to afford it . the cost for 30 pills is $ 7,681.99 thank god my co pay is only $3.00 . im sorry if i haven't replied to everyone . im just learning how to use the computer so im not sure where or to whom my messages end up LOL .

• By jetclark
• Reply 3722250 · In reply to 3709620 by angiehope
• January 20, 2013 at 9:17 am
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hi angiehope i hope u get this message because im having a hard time figuring out how to respond to other messages . i just found my messages . im sorry you dont have any medical ins. i didnt have any either & i kept going to different clinics because i was so sick to my stomach all the time . i remember laying on the floor throwing up with unexplained pain every morning before work , i lost so much weight , i went from being a size 8 to 0 i even found a GI DR. who found a place that would pay for me to have a colenoscopy & a scope down my throat , the place was called the SCREENING FOR LIFE & they also offer mamagrams . then finally i asked my boss to lay me off because i new there had to be a way to get medicaid . every time i tried to get it when i was working they would deny me & say i made 5 $ to much a month . i thought that was crazy , i felt like i was dying slowly & know one cared my kids where so worried & i looked like the walking dead or some kind of drug addict . finally i told my boss to lay me off for a month . then i went back to the state building & reaplied for medicaid . They finally approved my case . i have to reapply in march so next month i'll be laid off . please let me no if you recieved my message

• By jetclark
• Reply 3722583 · In reply to 3718505 by josie75
• January 20, 2013 at 11:17 am
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my triptase level was 102 the last time i went to my DR. my first triptase level was over 400 but im not sure the exact number because i didnt no anything about a triptase level the first time i went. but it seems to be getting lower now that im on this medician

• By angiehope
• Reply 3734334
• January 24, 2013 at 12:07 am
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Hi, Jet! Yes, I see your message!
I just started a new job 14 hours away from home so I could get health insurance. WEllllll, that didn't go well. The insurance is paltry and a co-worker was wacko. So, less than three weeks working and now I'm packing to put my stuff in storage and just go home again. I'm rather glad because I do miss home and my grandbabies. :-) But this has all been so disappointing and expensive.
Anyway, so, I'm still without insurance and have no idea how to get Medicaid. I teach sporadically online to pay my bills, so I'm sure it's too much money coming in. Of course, after taxes, it's below poverty level, so I can't win for losing. Ugh.
The bad thing is that going back home means going back to the Gulf Coast's tropical weather and hot weather means I ache and have to use a cane.
I'm feeling really down. Sorry.

• By jetclark
• Reply 3736911
• January 24, 2013 at 7:03 pm
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hi angiehope im sorry your job didn't work out , what type of work do you do ? im a flagger i direct traffic all day in construction sites , so im out in the hot & cold all the time . rite now its freezing here & that really makes me feel like my skins crawling . i think the silk underarmer cause me to react some how . but if i dont wear them i'll freeze its like 4 degrees with the wind chill .this is my last week then i'll be layed off so i can get my medicaid renewed in march .so im sure i'll get to spend a lot of time with my grandson he's 3 & he's great .