So, we know that I founded this forum to help people get better faster than I did when I first got ill. Ever wonder about MY story of how I first got sick and how I got better. So, what is my story? Well, here it is:

When I was 29 (I am 43 now), out of the blue, I got super sick after eating a steak at my parents' house. It was total nausea, flushing, feeling hot, then cold, diarrhea, feeling like vomitting (although I never do), near passing out. We didn't know what to make of it. A few weeks later, my husband and I went to dinner to a simple restaurant (Applebees. I have never eaten there, since! LOL). I got a basic chicken breast. That night in the middle of the night, I woke with stomach pains, went to the bathroom, felt super ill, had major diarrhea, and, apparently on my way out of the bathroom, I passed out! My husband heard a thump, thank goodness, and found me unconscious and in what appeared to be severe body tremors. I woke up, was totally sick, freezing, and couldn't stop shaking. Luckily, my husband had called 911. When they got there, I guess I even freaked out the paramedics! They were taking my blood pressure and calling the hospital, talking with them. The fireman paramedic chief even insisted upon riding in the ambulance with me -- don't know what that was about, but I have a bad feeling that they thought I was not going to make it to the hospital alive. My BP was super low.  When I got to the ER it was like out of a movie, with them rushing me in and all the doctors and nurses scrambling. The stupid nurses kept trying to get me to stand up so they could get a standing BP. I kept telling them I would pass out, and they refused to believe me. Well, guess what? I wasn't even standing a fraction of a sceond before I had passed out! LOL. (Serves them right. I think I fell on that nurse! Haa) I was shaking so violently and they couldn't figure out the reason. They piled heated blankets on me (probably a bad, bad idea, because heat is a trigger for me!), and they gave me a saline IV. Basically, they couldn't figure out how to help me. I think they gave me some nausea medicine, but it was probably compazine, which is bad, because that can degranulate mast cells (per Dr. Akin). Zofran is the best nausea medicine for us mast cell people, by the way.

So, basically, I stabilized a bit, but because of my BP, they had to admit me to the hospital. The next day, I was covered in a rash. Yet, no one thought of anaphylaxis, because most ER docs and nurses think you must have a swollen throat to be in anaphylaxis. Not true at all! The internal medicine doc on staff saw me and tried to help, but that was about it.  We really liked him, though, so we kept his name and, in fact, my husband switched to him as his regular doctor.
Well, I went home, and simply got better after a few days. Strange, we all thought, but no one knew what had happened. A year later (it was always around Thanksgiving. I have now determined that most Thanksgiving foods trigger me!), I had another attack, although this one was at our friend's house. I had eaten some crab dip. (Shellfish is a mast cell trigger.) Since I was not diagnosed and had not gotten ill for a year, I had no clue. Ended up passed out and in the ER again. Once again, they didn't know what to do or what was wrong. We discovered that when you tell the ER this has happened before and what to do, they don't appreciate it. (Now, I have an ER protocol note from Dr. Akin, so that they will take me seriously and know what to do to treat me if I ever end up in the ER again.)

Went home later that night. This time I didn't get better. I went to see my doctor, who blew me off and said I just had the flu. I got worse and worse, to the point that I couldn't stand or sit without going into anaphylaxis (although we didn't know it was anaphylaxis). My husband would help me to the bathroom and help me back to bed. I couldn't eat and couldn't even drink! I kept calling my doctor, whose nurse would just laugh at me and say it was the flu. Finally, I decided this was ridiculous. My husband called his doctor (the internist who had first seen me in the hospital a year prior), and got me in to see him. That doctor took one look at me, and totally took me seriously. He could even tell in that office visit that my BP was dropping, because he suddenly had me lie down and started taking my BP -- right when I was starting to feel ill and dizzy. Smart doctor. Anyway, he ran a zillion tests for anything and everything. He tested for giarrdhea, food poisoning, blood tests, etc. He tested anything he could think of. Everything was normal except that I had a super high ANA. He couldn't figure it out. He put me on a small dose of xanax to use as a anti-convulsant for my gut, and he had me coming in every week, sometimes more than that, to see him so that he could keep trying to help me. Basically, this doctor was like Dr. Cem Akin in that they both went 100% overboard to help me and they were both extremely compassionate and actually cared about me getting better.

So, for the next 4 weeks I remained super sick. The xanax helped a bit, but my body was in such a state that it simply needed to heal. I was bedridden for 4 weeks and honestly could not eat anything during that time. Eventually, I could sip a few spoons of chicken broth and I could sip water. Even those sips, though, started up my symptoms. All I could do was lie in bed and read books to try to distract myself because I was so nauseous and in a lot of GI pain. Even moving made me ill. Slowly, but surely, after 4 weeks I started getting better. I was finally able to sit up in bed. Then I could walk a little and eat a tiny bit of white minute rice (any other rice made me ill). I got to the point that I could once again function and go out, but I was like an elderly handicapped person because I was so fatigued from the effort of even walking from the parking lot into the grocery store. I felt as if I had the flu....for the next year! (Not joking) My doctor kept testing, but I didn't fit any category. He finally decided I had the worst case of IBS he has ever seen. Over those 4 weeks, I lost about 20 pounds (and I had been slim to begin with). The doctor was worried about the rapid weight loss and thought perhaps that I had Crohn's, but my colonoscopy was negative for that. Eventually, he really couldn't help me anymore, although he tried his hardest.

During this time, I kept a medical diary of how I felt, what I ate, how I felt after eating, what I weighed (because I kept losing each day), etc. This helped me track my safe foods and activities. The xanax helped me stop attacks, and that relieved stress, knowing that I could control this. As I began getting better, my internist suggested I learn biofeedback, because this had helped him get through chemo (he had had Hodgekins Disease). I found a Center in the hospital that taught it, and it helped me learn to grab hold of my anxiety once my attacks started and how to calm things down. This helped a ton, because even now I will "talk myself down" from an attack. This is crucial because stress is a major mast cell trigger for me.

Well, as it turns out, my wonderful internist's Hodgekin's Disease returned and he died within a matter of weeks. It was terribly sad to lose such a great doctor from this world. Even sadder, that now that I know that I have IA, I cannot tell him because he tried so hard to figure it out. So, I was left on my own. I was no longer on xanax (I got off that after 2 months, because it caused me to be too drowsy), and I just handled things. I felt as if I had the flu all the time, and I continued to get sick (anaphylaxis). The ERs thought I was crazy, but would do what I requested, which was saline and nausea meds. I lived that way for the next 10 years - undiagnosed and trying to handle it myself. Eventually, while in Disney World one year, a friend who was a doc at Rush Hospital in Chicago, witnessed an attack of mine which sent me to the ER. She said she could think of a rare disease, Mastocytosis, which this seemed like and she recommended I travel to Chicago to see a specific GI doctor there. I did that, and he diagnosed me with masto. (He was wrong about the masto part, but right in that I do have mast cell disease). He put me on Zantac and Zyrtec and told me to have a nice life. That was it. What a jerk (no bedside manner!). Well, I found that I did feel better with the meds that he prescribed. (I forgot to mention that I controlled all my symptoms those 10 years by being very strict on my diet and avoiding foods that made me ill. I also changed my lifestyle dramatically, by realizing that I could not continue on my chosen career path -- to be a college professor. I was at the very end of my Ph.D degree, and had completed nearly everything, but I dropped out because it was making me so sick (I was commuting 1.5 hrs to Purdue University for the degree). At the time, I was also running my own business. So, I dropped the degree, and decided to just grow my business when I felt well enough to do so. That helped immensely because stress, fatigue, and foods are my 3 biggest triggers. Changing my entire life helped me take control of my symptoms and help myself get better to an extent.)

So, although I was now on some meds and doing a bit better, I was still not well. I found an online masto email listserve (there were no masto forums like this one!), and through that I met an amazing woman there, Nancy Gould (who is now a member on our forum). She told me that I had to go see Dr. Cem Akin, who was at Univ of Michigan Hopsital at the time. She said he would change my life....she was right. I contacted Dr. Akin, who told me to come up right away. He spent 2 hours with me and my husband at my appointment, answering all our questions and helping me. He added some meds and changed some things. He gave me an ER protocol note, which I requested. He then sent me home, telling me to email him anytime with questions. He was more than happy to advise my doctor on anything as well.

Well, I went home, began my new meds, and my life was returned to me again. Whenever I have a problem, I email Dr. Akin and he helps me and I do just great. Those awful symptoms from the beginning of my story are still within me, but they never rear up anymore. I have never gone to the ER since I met Dr. Akin, as I have never gotten sick like that again. I now have epi pens that I always carry with me, but I doubt that I will ever need to use them due to the fact that I now am so well and know how to help myself. Dr. Akin and his knowledge truly did change my life. Eventually I went to Univ of Michigam to have Dr. Akin and his people do a BMB  on me (my results were negative). Dr. Akin thus diagnosed me with Idiopathic Anaphylaxis -- the same symptoms and triggers as masto, but from a different source. I take daily meds and I monitor my lifestyle to avoid my triggers, and this keeps me well. Am I perfect? No, but I can control my flare ups with extra meds (per Dr. Akin's instructions). I now run around with my twin 11 yr old kids, run my business, and am a happy mom and wife. I am a cheer coach and very involved with my daughter's 3 cheer squads and son's karate and tennis! Busy, but fun. I am a total opposite picture of what I was when I was undiagnosed and ill for those 10 years of my life. Knowledge and the helpful advice from Nancy Gould and ultimately Dr. Akin truly did change my life around.

As you can see, I have my own little success story here, and this is the reason that we now have this forum. I created this forum so that my story will not be repeated in anyone else searching for a diagnosis. If we can help others to help themselves, then this forum has served its purpose!

Thank you so much for taking the time to share your story and for creating this forum!  It's great to know that you are doing much better now and can work and have a family.