Hello everyone. Here is my story continued....

    The month I went to the Mayo Clinic, I had my first "event" It went something like this.....I ate dinner around 6PM. It was an ordinary day with no unusual physical exertion or stress. Around 9PM, while sitting in my recliner, watching a boring show on the TV, and starting to nod off to sleep, I suddenly felt anxious. Soon, I was having flushing feelings on the sides of my neck and face. My heart rate increased. I began to sweat. My stomach felt unwell. I began to tremble. After a time, my head had a pulsing feeling. My ears started to ring. I had the unexplicable urge to pace and walk around the house. If I tried to sit or lay down, all of the symptoms were amplified. It became difficult to get a full breath. I had chest pressure, not pain. At about 10:30 PM, I began having extreme discofort in my abdomen. Finally, I had the unstoppable urge to go to the bathroom. Everything I had eaten for dinner came out. I felt better for about 20 mins. then the whole episode started over again. This lasted until 3 AM or so. After that, other than exhaustion, I felt normal. This "event" began to repeat itself 2 or 3 times per week.
    At Mayo, the tested me for everything. I was there 3 and a half weeks. EVERY DAY there was some kind of testing going on. The suspected the following: autoimmune disease, ms, carcinoid tumor, other neural endocrine tumors, severe allergies, parasites, cancers, many diseases and conditions that I remember being discussed but can not recall their names. I had a team of more than a dozen doctors trying to figure out what was happening. In all that, never, not once, did I hear the term "mast cell". When I read thru the complete report, which is the size of a phone book, I do see that they checked plasma tryptase levels several times. I also had 4 24 hour urine tests which included many things. Everything always came back "within range" except for low testosterone. Complete body MRI with contrast found nothing except I was missing half of my pituitary gland. They suspected a pituitary microadenoma. My final DX was: IBS, lowT secondary to possible pituitary microadenoma, fibromyalgia, chronic fatigue, and anxiety.
So, home I went armed with lots of different meds, and orders to get follow up MRI's on my pituitary gland every year for 5 years. SLOWLY, things began to return to normal within my body. Follow up scans showed no change to the pituitary gland. By the 5th year, they said, there is no adenoma. You have what is called partial empty sella syndrome (along with all the other Dx's) CASE CLOSED.

    By this time, I was about to turn 40. Life had resumed a normalcy. My allergies always seemed bad, and worsened every year. My Fibro-body ache was bad, but tolerable. OK. This is what it is to get older. RIGHT?

    In 2010, I injured myself working on my farm. I lifted something a little too heavy. I felt a "pop" in my back. Went thru the usual workup. Finally found out I had a ruptured disc. Surgeon said he could fix it with micro-discectomy and I would be back in business in 2 weeks. Had the surgery and when I awoke, I knew immediately, something was very wrong. Doc said it was normal post-op pain. This was not normal. After two weeks, calling in every day, taking meds as I was told, I awoke to a paralyzed left leg. Went to the er. MRI. 5 mins. later, surgeon says that I need emergency surgery NOW. What was left of my disc had "exploded". When I awoke from the second surgery, the massive pain was gone. But, I had blurry vision in one eye. That night,in the ICU recovery room, they gave me a steroid, methylprednisolone, in my IV to reduce post-op swelling. Within minutes of having this hooked up, I began to feel unwell. Unwell in a very familiar way. I started to have an "event". This time, I was hooked up to all sorts of monitors. My BP soared to 210/140. My heart rate was 125. All of the "event" symptoms started to play out, in order, the same way they had so many times more than six years before. I told them to stop the IV. They said they could not without doctors orders. While they were scurrying around trying to figure out what to do next, I told them I would rip out the IV if they did not remove it now. They complied. The next day, four doctors in the room could not explain what happened. I did discover that during surgery, I had a mini "event" where my bp spiked, and then collapsed. They had to take drastic measures to stabalize me.....No-one could explain my blurry vision.
     Over the course of the next 10 months, my back healed slowly. BUT, my "events started to occur again. They increased with frequency and intensity. I started loosing weight. I began to develop food intolerences that I never had before. I began limiting what I ate in order to avoid "events" 11 months post-op, I had lost 26 pounds. I am 6'3''. Before this started, I weighed 203. I was now 177 and dropping. I got to a point where no food could be consumed without an "event" I had a constant gurgling noise inside my abdomen. I was given carafate, and taking prevacid. These did nothing. Finally, my pcp admitted me to the hospital. All the same tests all over again. NO answer. Finally, one nite, with 5 doctors in my room, I told them they needed to do something, or I would die. ONE doctor suggested it MIGHT be my gall bladder, even though those tests had come back "within range". So, what choice did I have? Doctors know best. RIGHT? .......Out came the gall bladder.
During that surgery, I had no "events" , recovery was remarkably smooth. Pathology came back. No cancer. nothing unusual. Gall bladder just looked "swollen". The tissue itself looked "swollen",no cause was offered. (and no, they did not check for mast cells)
      It is late. I am very tired. I will continue this tomorrow. I promise it is worth the read. Thank you for reading thusfar.
    Regards,
    Brian

    So, with his blessing and armed with the wonderful information from this site, I began self treating. I doubled my daily Zyrtec. I started taking 20 mg pepsid, at first once a day. I IMMEDIATELY had a positive response. I upped the pepsid to twice per day. MORE improvement! I then looked at my diet. I had eliminated gluten already but, after looking at the long list of foods that either contained histamine or prompted a histamine response, I realized that I was consuming MANY of these foods. SO, I basically adopted a PALEO diet. That improved things as well! By this point, I was convinced That I had some kind of mast cell problem.
    My doctor started calling around, looking for someone to send me to. I live in Virginia, in the mountains. I really wanted to see Dr. Afrin at USC in Charleston, SC. But, he had relocated to MN. I called Dr. Cassells in Boston but, the wait was VERY long. Again, thanks to this site, I learned about Dr. Schwartz at VCU in Richmond, VA!  I had an appointment for the end of JULY!!!! In the meantime, I went back to my endo. I told him all the news. I TOLD him to run one more complete batterry of tests to rule out the differential for mast cell which I learned from this site was NET's. including carcinoid and pheochromocytoma.
He ran all the proper tests. I had the results, all within range. I brought these with me to Dr. Schwartz.
      I really like Dr. Schwartz. Nice guy. VERY intelligent. I told him my story. Showed him all of my records and recent rests. He chuckled and said, " I think you might be the first patient that I;ve had that self diagnosed AND ruled out the differential diagnosis."

    I almost wept. It was hard to hold back the tears.

    He said, he needed to order up some bloodwork that day. He also gave me a prescription/medical order for plasma tryptase draw to take with me in case I had an "event" with instructions to go to the nearest lab/doctor/hospital as soon as possible during or immediately after an event. I told him that I could trigger an event by consuming gluten if he wanted me to do so. He said no. DON"t DO THAT! He set my follow-up appt. for November. On the way out the door, he asked me," have you had any recent imaging?" I told him the last CT I has was ffor my gall bladder surgery in 2011. He was quiet for a moment. Then he said, " It wouldn't be a bad idea to get some imaging" He did not order any. But, on my way home, I called my primary and told him that Dr. Schwartz was ordering up a bunch of testing to be done by him and that he wanted a CT. My primary said, GREAT. He ordered a CT. My appointment was for the end of August.
    In the meantime, I had all the blood and urine testing that Dr. Schwartz had ordered. Some of the tests needed to be sent to the Mayo clinic. Most of the tests, the local labs had never done. I then had my appt. with the Celiac DR. He heard the whole story and ordered up a bunch of tests as well. Finally, the day of my CT scan arrived. I entered the machine without the slightest bit of trepidation. I had a mast cell disorder. It was treatable. I already felt better with the restricted diet and H1 and H2 agonists. The puzzle was finally solved!

    The first results back were plasma and urine tryptase and their metabolites. Everything was within range except Urine Prostaglandin. The range was <1,000. Mine came in at  2,486.
    Next up was Celiac. I tested positive for the Celiac gene, but negative for antibodies. The doc said that did not surprise him because I had not consumed gluten for 18 months. He said 80% of those that test positive for the gene, are at least gluten intolerant. So, he dx'd me as gluten intolerant. He said the only way to dx celiac would be an intestinal biopsy.
    Dr. Schwartz called me to tell me he believed I had a mast cell disorder. The 11 beta prostaglandin level and my positive response to H1 and H2 agonists was enough to dx. He wrote an Rx for Cromolyn.
He said to start it asap.  He said at the very least, I had mastocytic enterocolitis but, it could be a mast cell activation disorder as well. And, he would see me in Nov.
    Finally. Finally. Finally.................


    Then, I got the call.

    My primary called me. They saw a "lesion" on my CT. I needed to have a contrast MRI. A week later, I was in the machine. The next day, my doctor called and asked that I come in to the office.

    I have an extra-adrenal pheochromocytoma/paraganglioma located in the organ of Zukerkandle, near the aortic bifercation.


    This tumor, in it's location, is a one in a million. Literally.

    VERY FEW doctors will ever see one in their entire careers.

    My choices were:  MD Anderson, Mayo, NIH, or the Cleveland Clinic.

    And so, the earliest available appointment was in Cleveland. Here I sit. Awaiting surgery.

    I am very tired. I thank each and every contributor to this site. If you suspect a mast cell disorder, it is VITALLY IMPORTANT to ELIMINATE ALL POTENTIAL DIFFERENTIAL DIAGNOSIS!

   I have a little more to tell but, I need to sleep now. I will try to finish my story tomorrow. I have a few questions to ask of you all as well. I need your help. IT involves methylprednisolone as rescue treatment for anaphalaxis during contrast scans. I NEED to have a special type of contrast scan called an MIBG. It needs a barricade treatment to protect my thyroid gland from absorbing too much radiation during the scan. I am allergic to the blockade, SSKI, iodine, iodate, Lugol's solution.
The doctor here who specializes in pheo/para surgery does not know about mast cell activation. IDEAS?

    Thank you all so very much.

    Regards, Brian

Thank you for sharing your story.  This story could be mine.  The lab lost my 24 hour urine 3 1/2 years ago and I haven't done it again because every single day I get up and forget to start it....

I am happy for you to have answers and validation for feeling so lousy for so long.

Not one of the 20+ doctors I have seen, ever went to a second round of investigation.  I need a gut scan and do the 24 hr. urine test.

Please keep us posted!!  Feel well!

    Hello everyone. I hope your day was good. I have quickly come to realize that EVERY day is a good day, no matter what we endure.
    I had the MIBG scan. I did not have a thyroid blockade, as no potassium perchlorate could be located. I react too strongly to iodine that is used to blockade the thyroid from radiation from the radionucleotide. I did take benadryl ahead of the i123 injection in case I reacted to that! Everything went smoothly. I just received the results. My pheochromocytoma/paraganglioma did not uptake the i123. This was bad news. MIBG therapy is the most successful therapy for my kind of tumor. So, I have the surgery date, December 1st. Please keep me in you prayers. I will update with any new info. and check in one last time before surgery. Thank you all. God bless.
    Regards,
    Brian

    Thank you Britt.

 Well, the big day has arrived! I am at the Cleveland Clinic. Surgery is Tuesday (tomorrow). I wish everyone who has read my story the best of luck and even better health! GOD bless you all.

    Brian

Brian, I have been so remiss in not reading the forum posts for months because I have been so busy in my own life. Had I read your posts, I would have been responding to them.  Wow! What a fascinating read this has been! I am SO glad that you finally found the forum and the right doctor who can guide you with the mast cell disease. I am not surprised that you eventually figured it out on your own, because reading about your earlier life (before symptoms) and how you were an athlete, that tells me that you have a determined and disciplined personality. If you can train to be a triathlete, then you definitely know how to focus and work toward your goals, in this case finding a diagnosis and getting better!

So, first off, how are you doing? I really hope that you come back with good news that you are feeling better. When I read about your symptoms during your episodes...oh my gosh! Those are EXACTLY the symptoms I used to get (except I don't have chest pain and I actually get additional symptoms). Even your need to walk around and then feel worse when you lie down - that is just like me! I did find that I could lean back on a back rest sometimes if I was just too exhausted during a mast cell attack.

Have you had success with the Cromolyn? Also, have you ever tried Zantac along with the Zyrtec? I don't know if that is alright to take with Cromolyn, but if it is, Zantac helps a ton with our mast cell GI symptoms. Some people take Pepcid instead of Zantac. It's all very individual. I personally prefer Allegra to Zyrtec, although I have to take both daily. (I take Zantac and Allegra in morning and Zantac and Zyrtec in evening). My symptoms are controlled well with these meds. I will never feel "good and energetic", but I feel good enough to enjoy my life. It is far better than feeling like I had the flu all the time. Now, I just might get a stomach ache and feel fatigued sometimes. Taking it easy helps prevent that for me.

I can't wait to hear how you are doing. You have discovered that being your own investigator is the way to help yourself. Even our mast cell specialists can only share the knowledge they have gathered from their experience and research. It's up to you to hone that and apply it to your own situation. Although you really like Dr Schwartz, I would get that appointment with Dr Castells set and add her knowledge to your case. She is one of the leading specialists in the WORLD, so that can only be a good thing to add to your arsenal of knowledge.

Please let us know how you are doing!