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Finally proven right... I have MCAD. (Read 5850 times)
minnebama
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Finally proven right... I have MCAD.
09/12/13 at 15:51:01
 
Hello everyone... I'm glad to be here in a place where people understand my frustration! Smiley

My story starts summer of 2012 when I had an anaphylactic response to eating more flaxseed than I'd ever ingested before (protein balls I had made). I didn't lose consciousness, but I was dizzy, incredibly weak, sick to my stomach, pain in my chest, felt as though someone had their hand gripped around my throat. I kept coughing to prove to myself that I had an airway. Went to the ER and all they heard me say was "chest pain" even though I insisted I was having an allergic reaction. To appease me they gave me 50 mg of Benadryl then proceeded to do an EKG, chest xray, etc. The Benadryl did it's thing and my symptoms subsided... they, of course, found nothing wrong with my heart or chest. At the time I knew nothing about mast cell activation - I wish I'd known as I would have asked them to draw for tryptase.

I never felt quite the same since that episode. I chalked it up to early menopause or my PCOS. Over the next several months I was gaining a lot of weight from no activity, so in March of this year I decided to do something major and began doing Medifast. If you aren't familiar, that's 5 of their pre-made, pre-fortified meals and one "lean and green" meal you prepare yourself each day. It was working great! - but only 2 weeks into eating the stuff, I began breaking out in hives. The front of my pelvis, my neck and upper back, my lower back, my sides, my hands... they were everywhere. I went to my GP who prescribed Prednisone for 10 days.

My reaction to Prednisone was similar to how I felt the summer before in the ER with the flaxseed. I could hardly lift my arms, so weak, sick to my stomach, tingling in my fingers and toes. I called my doc and told her I was having an odd reaction to the prednisone, but she told me to continue to take it. I did, reluctantly, because it WAS easing my itching which was making me miserable. Unfortunately, by the time I tapered down to 10 mg from 40 mg, the itching returned and I asked if I could try something else. My doc put me on ANOTHER WEEK of the stuff saying sometimes it takes 2 weeks to really work. I did so for 3 more days and finally said, "No more." So then we get the idea that maybe I'm allergic to the soy protein isolate in the Medifast. IgE test says No. Celiac? Nope. GP finally just throws up her hands and says, "Try an elimination diet." Gee, thanks.

Well, I ain't got time for elimination diets so I made an appt for myself with an allergist. He heard my story, told me to get the heck off of Medifast, but then said he didn't think my issues were food allergy related. As he was checking out my rashes, he noticed the raised claw marks all over my skin where I'd been scratching. He asked me to turn my arm over and scratch it with my fingernail and we watched Darier's sign develop. He explained Dermographia to me and said he wanted to check me for Systemic Mastocytosis with a tryptase test. We had the blood drawn and I went home and Googled SM. I was sure that mast cells were the answer to this, so I was surprised when my tryptase levels came back normal. Allergist didn't know that tryptase is just one way to test for mast cell disease, so he told me I didn't have it and pushed a heavy duty H1 AntiHis at me, hydroxyzine, to take at night. I started at 10 mg and ended up at 75 mg before I got enough relief to finally sleep through the night. His plan was for me to take it for 3 months then slowly taper off.

By this time, I had been on Medifast for 2 months and had lost 32 lbs. I was trying to get healthier despite how crappy I felt, and I'd signed up to do a 5K nighttime run with a couple of friends for the end of May 2013. As I was itching and working my way upwards in dose of the hydroxyzine, I was also trying to train for a 5K and failing miserably. I'd done the Couch to 5K program before and easily ran several races in 2011. This time though, despite my lost weight, I was struggling with my breathing, my endurance, and when I got home I would crash on the couch and stay there until the next morning. I thought I was just training too fast and so I added an additional rest day between runs. Anyway, I had only reached Week 5 of the 8 week Couch to 5K when the race arrived. And I did run/walk the race. I could tell I was pushing too hard but I was so determined to prove my body wrong - that mentally, I could do this! I finished, but it was so hard.

That night I woke up every time I moved. The next morning, I couldn't get out of bed. Every cell of my body screamed at me. It would be 5 days before I was able to walk out in public with any dignity. This was the first week of June 2013. Since then I've had more pronounced daily joint pain, muscle pain, dizziness, tingling extremities, upset stomach and diarrhea, nausea, daily flares of vasodilation, exhaustion, headache, chronic rhinitis, etc. The hydroxyzine helped my itching, but the rashes remained. Some of my other symptoms improved a little too, but not completely. I wondered if it was endocrine related. A trip to the endocrinologist said NO. I wondered if it was autoimmune. My GP ran ANA titers along with tests for Lyme and Ehrlichia. All negative. It was now the end of July and I was frustrated. On a whim, I applied for an appt at the Mayo Clinic in Rochester. They called me the next week and I got into a cancellation slot within 3 weeks.

At Mayo, you start with the General Internal Medicine doc, he scheduled me for every test under the sun... Ct scan, MRI, blood tests, allergy tests, pulmonary tests, xrays. The one specialist they couldn't get me in to see right away was Allergy. I would have to wait until September (a week ago, actually) to get in there. Every test the GIM doc ordered came back normal, including a 2nd tryptase test. All that was left was a 24 hr urine that I was to drop off the morning of my Allergy appt. I felt I'd lucked out because the P.A. I was seeing was "working with" Dr. Butterfield that day. BUT, the P.A. didn't see my issues as mast cell related, especially with a low tryptase. Ugh. Even MORE frustrating was that Dr. Butterfield agreed with her. Um, isn't he supposed to be an expert and know that's not the end all, be all to MCAD diagnosing?! I left there with instructions to add a non-drowsy H1 AntiHis (fexofenidine 180 mg) in the morning, as well as H2 (ranitidine 150 mg qd). Oh, and Flonase. They prescribed me Flonase. How disappointing.

Then, this week, my 24 hr urine results came back. Hallelujah, something finally showed up on a test! My BPG2 levels were high. I immediately asked the GIM doc that saw me first to check with Dr. Butterfield about it, and I got the note back yesterday that Butterfield did, indeed, say it was mast cell activation. What a strange feeling I had to be happy and sad about a diagnosis at the same time!

Butterfield added 81 mg of aspirin, twice a day to my regimen and told me to check in after a month to report if it's helping. I guess having only 2 anaphylactic episodes isn't enough for him to jump at doing any biopsies right now? Personally I'm nervous about it. I want to know if I should be carrying around an Epipen, and should I have a Medic Alert bracelet. He seems so nonchalant about it like it's no big deal. Maybe I shouldn't be so freaked out either?

So that's where I am. If you've read this far, I thank you for reading.
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legd
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Re: Finally proven right... I have MCAD.
Reply #1 - 09/13/13 at 02:54:12
 
Hi minnebama,
I'm not one of the experts here (I also just joined the board), but I would say, yes, you should have an epipen -- I think that's pretty much the advice for anyone with a mast cell disorder (and especially with the kind of reactions you've had).

As for the biopsy, I believe it's standard practice not to order a biopsy if tryptase is low.  Chemicals like PG2 and histamines can be produced at high levels from the activation of a normal number of mast cells, but Tryptase is considered a marker of not only activation, but the mast cell load (i.e. the number of mast cells).  In other words it's highly unlikely to have a low tryptase with mastocytosis (which is too many mast cells), so they don't order the invasive test.

I think one of the things we all learn with this, is not to push our bodies too far.  Every time I try to go 'past my point,' I pay for it  Undecided  I hope you find the aspirin and antihistamines work for you.  I think most people also take a mast cell stabilizer such as Gastrocrom or Ketotefin -- that might be the next step for you if the aspirin doesn't do enough.  Be well
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Lisa
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Re: Finally proven right... I have MCAD.
Reply #2 - 09/13/13 at 16:33:53
 
Hi Minnebama, welcome to our home.  I hope you feel at home here with us.


I'm sorry you're going through such a hard time but I'm glad that you've not had to be working so hard to find answers.  It can take many years for some of us to get our answers.   And yes, it's strange to feel "happy"to get a positive test result.  It's not really  "happy"that I would call it, bu t more like RELIEVED is a better way to call it.  

As to the attitudes you encountered at the Mayo, this is well known within the masto circuits that you have most of the known experts not recognizing the MCAS patient even though they know about us.   This makes no sense to us either.  Dr. Butterfield is a known and recognized masto authority and was involved in the MCAS consensus meetings in 2010 when it was officialized.  Yet, masto is a very difficult disease to diagnose and this is one of the reason why some of them can be so conservative in their judgements.  Dr. Butterfield , however, fully recognizes the elvated PGD2 markers and has several papers studying this, so this is one marker he was not going to ignore.  Unfortunately they don't understand why some of us will show normal trytpase and yet elevated histamine or prostaglandins or an elevated tryptase but normal histamines and prostaglandins.  It's a confusing illness and this is very difficult even for them.  

As to excercise, you need to be careful with it for it's a major trigger for many of us.  Excercise pumls the blood up and gets the mast cells reacting.  Some of us can handle it, but others can't and so you need to be sensitive to what your body is telling you.

As to an epi-pen, yes I think you should have one especially since you have a history of them already.  But that doesn't mean that you will need it, especially after you get on the right meds schedule.  Our stability relies upon our meds most of the time, so if you are on a good schedule and you begin to identify the triggers, then you will find that life will return to almost normal.   It is wise to consider your foods and see what those things are which can trigger you and consider a diet which suits you.  Some of us do low histamie diets or low salicilate diets, and others take out gluten, but then there are others who do just fine and don't have food issues.  Masto is a very individualistic disease and each of us is different and unique.   So, it's all dependant upon you and what you go through.   We have the resources here to help you, so please feel free to open up and fire away at any questions you wish.  

I hope this helps!!!


Lisa

 

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Don´t forget, there is so much more to life than being sick!
 
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minnebama
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Re: Finally proven right... I have MCAD.
Reply #3 - 09/16/13 at 12:24:30
 
Thank you for the welcome legd and Lisa!
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