brethor9 Posted November 15, 2011 Report Share Posted November 15, 2011 Okay all my mast cell friends I need your help!!Just got back from seeing my internist today because I have been breaking out in an allover body rashn numbness in the face, severe joint and muscle pain, loose bowel movements and nausea.....oh and I was in SVT (120's) with high blood pressure.....he really wanted me to go to ER I declined saying this happens all the time....if you could have seen his face! I said last time in the auto specialists office it was 145 lol! Anyways he was immediately going to try me on another beta blocker until he looked at the rash covering my back and torso.....he said this looks like a histamine reaction...I wonder if you could have mast cell issues??? (he is very smart!) unfortunately I livin in a small town and we are not sure with what testing to proceed with? (he ordered urine testing but no lab here does it only plasma.....are there other tests? also what is the standard treatment proptocol? I am trying to gather as much info as possible so he can go ahead with treatment and discuss with my auto specialist......I could use any help and adviceThanksBren Quote Link to comment Share on other sites More sharing options...
Maiysa Posted November 15, 2011 Report Share Posted November 15, 2011 sorry to hear you're not feeling well. I just had a doc appointment and he is doing a tryptase blood test and he said otherwise to test for mast cell, he would have to go into the bone marrow. Yikes. So we are doing blood test. But I truly don't know anything about this disorder, they are just ruling it out for me. feel better soon! Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 15, 2011 Report Share Posted November 15, 2011 Wow, Bren-I'm impressed. Not with your symptoms, sorry! But, with your doc. The best place to start with testing is to do a serum tryptase blood test. If it is high, you may have mastocytosis. If not, you may still have mast cell activation (MCAD/MCAS.) There are many mediators that your doc (and a more sophisticated lab) can check for:-urinary methylhistamine-urinary prostaglandin D-2-serum heparinThese are probably the most common, but they have a very short shelf life and are hard to catch. Try to do testing within an hour or so of an episode.Most of us end up starting with an OTC zyrtec (H-1) and zantac (H-2) combo. If that helps you have some confirmation that your symptoms are mast cell mediated. With symptoms as severe as yours, you will need to have a stronger H-1 at night, like benadryl, atarax, or even doxepin. Many of us benefit from singulair. Some have to add a mast cell stabilizer as well, like gastrocrom or ketotifen.Be sure to run all of this by your smart doc and ask that he prescribe an epi-pen to use in case of emergency.I know I've forgotten a ton, so all you masties- PLEASE chime in! Sounds like you are getting closer to finding what's behind your dysautonomia. This COULD lead to a major improvement in symptom control. Hang in there- this is scary stuff when you are so symptomatic.Julie Quote Link to comment Share on other sites More sharing options...
bensman Posted November 16, 2011 Report Share Posted November 16, 2011 Hi Bren,Do you live close to me? I am desperately looking for a good local internist!! That is so wonderful that you have found a doctor that is compassionate and thinks outside the box.I don't have much to add to Julie's post, but do want to reiterate to try to do your labs immediately after a flare. I know that is easier said than done, but it will give you a more accurate reading. Here are some of the labs a mast cell expert, Dr. Lawrence Afrin, ran on me. Serum TryptasePlasma Histamine - prechilled tube and send on icePlasma Prostaglandin D2 - prechilled tube and send on icePlasma Heprin Level - prechilled tube and send on iceChromogranin AUrine for Prostaglandin D2 - 24 hr urine - send on iceUrine for N Methyhistamine - 24 hr urine - send on iceBest of luck,Kate Quote Link to comment Share on other sites More sharing options...
brethor9 Posted November 16, 2011 Author Report Share Posted November 16, 2011 Thanks girls for the impressive replies!!! I have taken all the info and passed it on to my internist....so now just waiting...Julie- I started having numbness in my chin and lower face and then the next day we discovered my back, chest and torso were covered in tiny little bumbs the size of pimples....very strange....I have never had anything like it.....since you are very knowledgeable on mast cell does that sound at all familiar? I have also been having severe nausea, weird skin tightness, the bumps itch and burn when touched or exposed, stomach cramping and loose bowel movements....I have tried benedryl but it hasnt helped much and I already take 150 mg of Zantac daily for GERD...no relief......funny enough its the chin numbness that worries me because literature says its the first symptom of met cancer?? I am just in a kerfufel over this......Katie- I live in Ontario Canada....not sure where you are located???Bren Quote Link to comment Share on other sites More sharing options...
Godsgal Posted November 16, 2011 Report Share Posted November 16, 2011 I wanted to mention that beta blockers are not good for people with mast cell problems. I took one for a while and I was better off of it! Try the benadryl in a really bad moment and see if it helps. Or try an h1 (claritin, zyrtec, allegra) AND an H2 at the same time (pepcid, zantac, tagamet) when you're not feeling well and see if it helps. I have numbness across my face and I started trying to link it to things. Pepcid actually made my whole face & throat go numb for about a month. It was terrifying! I stopped the pepcid and the numbness stopped. Don't worry about cancer!!!! The numbness is directly related to mast cell issues. I mean, mention it to your doctor and everything but you know what I mean. I have worried so many times about cancer and I don't have it thank God. Take care and I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
blueskies Posted March 27, 2013 Report Share Posted March 27, 2013 Hi Godsgal,Thaks, very interesting about the numbness. I get daily migraine -- somewhat controlled by medication -- but I do get breakthrough pain. Very often one of my pre-migraine signs is numbness, on the face, usually around the nose. And as crazy at this sounds one of my fingers will sometimes go almost completely numb. These sorts of aura -- as well as visual, sometimes, or phantom smell etc is, I feel, more evidence of pots, mast cell activation problems and migraine all being connected for me.blue Quote Link to comment Share on other sites More sharing options...
NaomiSpellman Posted March 28, 2013 Report Share Posted March 28, 2013 I also get many tiny bumps, as well as diarrea, red flushing at joints, groin or joint pain. Additionally I get ear cystes and vertical red marks on my abdomen and low back.Do you have symptoms in rectum and vagina? I have bumps, inflammation, pain, and fluid in there during some of these cycles. Have been diagnosed several times with benign (non- std) conditions down there: avuncular vestibulitis and bernard's cystes - these may have been misdiagnosis. Sometimes cannot take a step without stopping to recover with each step. My neurologist assumed it was Shingles and I've been on anti-virals for it, which helps for a couple months before plateauing. But he never actually tested me for Shingles! Hmmmmm. And my cardio also mentioned MCA to me, and he said these particular symptoms are allergic-type histemic reactions. HE also put me on an anti-viral, and suggested in the future we try antihistimines. This is all so complicated. I think i need to earn an MD to understand all this. In my case I have no insurance and no way to get tests, so I instead am prescribed meds to see if they counter the symptoms. I can see now why the Mast Cell Diagnostic tests are prohibitively expensively. Quote Link to comment Share on other sites More sharing options...
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