Join Date: Oct 2012
Location: Boston, MA
| | Re: New Here- I need help finding what's wrong with me... Anaphylaxis
- First episode occurred in 2008 when I was helping a friend renovate a home where I had never been before. I was in her bathroom helping her clean up turpentine. I then began to develop aching pain in my stomach: as if I had to move my bowels or was getting my period. I ended up leaving as it got more severe. On my drive home I began to have trouble breathing. Once I got home, I ran into the bathroom and started to have labored breathing and severe diarrhea. I became very nauseous and asked to be taken to the hospital. I developed itching of the skin, a rash and hives. I was given epinephrine and an IV at the hospital. Was not tested by blood or urine for anything. I was told I had an anaphylactic reaction and was given Prednisone and few other medications. The doctor suspected I was allergic to the turpentine fumes.
- The next episode occurred a few weeks later. This time I was at my own home and started to develop stomach pains and got hives. I got myself to the ER before it developed into anything further. I had some diarrhea at the hospital and was nauseous but did not vomit. I received the same treatment and was told that it might be a delayed reaction to the last episode.
- I had another episode in the early morning hours (the other two were in the evening) before leaving for work. I believe this was in October 2009. The night before I had gone to a town fair and had eaten typical fair food that I get each year: French fries, a hot dog, fudge. I had left over fudge and snuck a piece in the morning before work. I was getting into the car when my stomach started to hurt. I thought it was due to the fact that I was due for my period. I ran into the house and got some Tums (I had some acid reflux), some Pepto (stomach pain) and some medicine for period pains. I started to drive to work and got half way down my street before I turned around. I ended up in the bathroom and saw that my face was a bright red, almost as if I had a horrible sunburn. I then began to itch very severely. Hives were all over my body, from my face to my legs, to my private parts. Even my ears, hands and the heels of my feet. I got severe diarrhea and my stomach/abdomen hurt so badly that I had to scream for help. I then began severely vomiting. My airway started to close and I had severe labored breathing. My lips began to chap and turn blue, and my face became sweaty. I felt as if I had a fever. I was taken by ambulance to the ER and was told I was in anaphylactic shock. I was given an IV, epinephrine, Benadryl, and other drugs. I had to get a breathing treatment, and stayed for a few hours until I was stable. I was told that I was allergic to chocolate and nuts as I had a piece of peanut butter/chocolate fudge. I knew this was impossible as it was an everyday item I ate and I had just eaten it the night before with no reaction.
- These first few episodes were while I was living with my parents. We owned a cat and a dog. Over the next few years I had a few more occurrences- all of them had a tie in of abdominal pain signaling something was wrong. Every time I had some sort of labored breathing and hives. Often times I had nausea, but I did not always vomit. I always ended up having diarrhea, although some times were much worse than others. Most times I would be sweating.
- I had been out eating at TGIFriday’s and ordered a pork chop/mashed potato/onion ring meal that I got literally every time I went to Friday’s. An hour after my meal, while at my boyfriends’ parents’ home, I got severe stomach pains. I then got hives, and a sunburn rash, and got labored breathing. By the time I made it to my own home (I was living in an apartment with my boyfriend and our bulldog), I had to rush to the toilet and had severe, severe diarrhea and uncontrollable vomiting. I could not manage to catch my breath and my abdominal pain was the worst it had ever been. I was screaming to my boyfriend that I needed 911 and I may be dying. He had to inject me with an EpiPen and I was immediately rushed to the hospital. My lips and hands were blue; I could not breathe and I could not control my bowels. This time the ER told me I had an anaphylactic reaction and was possibly allergic to pork.
- I was seen by the following: an asthma/allergy specialist who tested me and I came back with the results that my lungs were “as if I was a 60 year old” so I was treated severely for asthma with Albuterol, Singular, ProAir, Symbicort; she concluded that I was allergic to pollen, some grass, some trees, rabbit and dog; none of the food allergy tests returned any allergy results (she tested me for chocolate, peanut butter and pork as previously suspected); she had said that rabbit was minimal and dog just caused some hives but none of these would cause anaphylaxis; I was tested for Carcinoid Syndrome via 24 hour urine test and it came back negative; I was given an abdominal ultrasound to check my abdominal region and it came back normal; I was given a vaginal ultrasound to check for cysts and tumors and it came back normal; I have tested positive for Lupus Anticoagulant; I have been tested positive for HPV and Chlamydia; I have had numerous blood work and urine samples taken; I have had my Thryroid monitored because every woman on my mother’s side has had to have it removed and two of my aunts had thyroid cancer; I am unable to lose weight. My PCP suspected that I had Lupus. And the fact that I was positive for Lupus Anticoagulant, made him take me off of birth control pills and have my family tested as my mother had a stroke at age 50. I was seen by a rheumatologist and was told that I may or may not have Lupus, it wasn’t black or white, and that I had a vitamin D deficiency. He gave me a prescription for vitamin D. I was also tested by a prominent MA hospital’s rheumatology department and did not receive any sort of results after months of calling and asking for my test results. I had to write a complaint letter due to lack of professionalism and response. A doctor called me and left a voicemail apologizing for the lack of reply their department gave me, and said that he could not shed a light onto what was wrong with me and to keep looking for answers, possibly to see the Hospital's Allergy Department. I was also tested for Toxic Shock Syndrome in the hospital and for Lyme Disease by two doctors. I am a frequent camper.
- I had another episode in January of 2011; this was another episode where I had to be taken by ambulance to the hospital. This time I was back at home with my parents. I had not been eating anything at all. Nothing was out of the ordinary. I was awoken from a deep sleep at 2 am, and had severe abdominal pain. I then quickly deteriorated within 10 minutes: severe diarrhea, vomiting, hives, sun burned skin, sweating, shaking, labored breathing. I was again taken by ambulance to the ER. No tests were run. I was given the usual medicine to control my symptoms and Prednisone and other meds to control them from flaring at home.
- Nothing happened for 6 months so I thought maybe I was in the clear. I got the occasional hives and noticed that I have had worsening seasonal allergies each year since 2008 when I never had allergies before. I also had more and more acid reflux and had very very infrequent bowel movements. I would say that I always had sporadic bowel movements but since 2008 I have gone less and less. I also started to realize that I have aching and swelling in my knees and that my ankles will sometimes swell. My hands and fingers will also swell and get numb. I thought it must have been because I was overweight. I had joined a gym and started eating 1200 calories per day in an effort to lose weight and control my asthma. I was at my largest 186 lbs. The most I had ever lost was around 15 pounds and no matter what I did I could not lose weight. I was having more and more trouble sleeping through the night and was getting severe, severe leg pains. I would stretch in the middle of the night and wake up with this severe pain in my leg, as if the bone was stretched and snapped in half. The pain would last for days and I would have a hardened muscle and be unable to walk. They would be very swollen. This seems to occur more and more. I would also frequently wake up and have trouble breathing and need to take my inhaler constantly. The past few months I have had severe memory loss. I will often start something or move something and forget about it within a few minutes. This has become so frustrating and I have no idea what would cause this. I am unable to remember anything, yet have an amazing long term memory. I will get in the car to drive somewhere and will forget where I am going. I will also start a conversation and forget what I am talking about. I have also noticed a lot of hair loss, and am always tired even when I am able to get in a nap. Sometimes I will lay down for a nap and will sleep for 24 hours straight, waking up still exhausted. Most of the time I will wake up every few hours. I also have no appetite and am always thirsty. I thought a few times that I was pregnant because I could smell things very prominently and I could taste everything in food. Things I used to love would be so salty or so bitter that I could no longer eat them. I also started to gain more weight even though I was eating right and didn’t have much of an appetite. My breasts had also been very tender. The month before I had noticed discharge and blood in my breasts and was given a breast ultrasound to make sure everything was okay and it came back fine. I had a lot of random things going on, but I just brushed them all off and started to feel that my anaphylactic episodes were over.
- On June 28th, 2011 at 2 am I was again awoken from a somewhat deep sleep and had severe abdominal pain. I prayed to God that this was not happening again. I was just getting over my period, so I knew it wasn’t an onset of cramping/period issues. I ran into the bathroom and was unable to have a bowel movement. I talked to my father and told him that I wasn’t feeling right and to stand by. I went back into the bathroom and tried to go again and nothing happened, but my stomach was hurting more and more. I kept checking my stomach because it was getting very itchy and hot. I didn’t see any hives. I then started to sweat very severely, and the sweat was dripping down my face into my eyes and mouth. I then because very nauseous and was dry heaving. I was unable to vomit. My breathing became very labored. I was still unable to go to the bathroom, so I ran into my room and got my inhaler and my EpiPen. As my breathing got worse, I took some of my inhaler. I was unable to catch my breath. I then started to have severe diarrhea. My stomach started hurting so badly and I was so red and swollen, and having trouble breathing, that I administered the EpiPen on myself. I called for my brother to call 911, and was taken by ambulance to the ER. This time I actually had a doctor and set of nurses that took blood work and a urine sample. I was in the ER from 2:30 am until 10:30 am, and was then admitted overnight to the hospital. I had a horrible doctor that seemed to think that this was in my head and that I need to pray. However, I had an awesome set of nurses that seem to think that this is in fact an autoimmune illness and to keep trying until I get answers. I was told by the nurses and the doctor to have a sleep study done to see if I have Restless Leg Syndrome and to be checked for Sleep Apnea (which my father suffers from). I was also told to see a Gastroenterologist for my stomach issues and severe constipation to see if there is a connection. I was told to find a new allergist to see if they could find what I was allergic to, although each time I have a reaction it seems there are different circumstances: different locations, different foods, sometimes eating/sometimes not, different seasons, different times of days, different people around, different clothing/bedding, different animals. I was also told to find a new rheumatologist as it may in fact be some kind of autoimmune disease (Lupus, etc). I was also diagnosed with a UTI.
- A few months past and I had no reactions. But then in September 2011, I had another severe episode. I was at my boyfriend’s sister’s house. We were all together, the entire family, and had just finished eating a meal. We had ham, cheese potatoes, and corn. And followed with a dinner of raspberry icecream pie. I have had all of these things very often, in fact they are some of my favorites. I finished my meal and was playing with the kids, and then just sitting on the couch when I felt extreme shooting pains in my abdomen. I begged my boyfriend to take me away from the house so I wouldn’t get sick in front of the kids. He drove me to his parents’ house 10 minutes away. I got hives, labored breathing, was sweating, nauseous. I had severe diarrhea and vomiting, and was so red and sweaty. I administered the EpiPen and my boyfriend took me to hospital in Newburyport. The doctors were told to take a Tryptase Level for my new allergist, from Lahey Clinic. He suspected that I was dealing with Mastocytosis. My test results were returned with only slightly higher than normal results, nothing that was black and white and pointed to Mastocytosis as a solid answer.
- I went to the allergist regularly so that I could see what was going on. He did not have an answer for me, but he helped treat my asthma because it was so bad. I was put onto a controller inhaler, and Singulair. I used this for about a year with slight improvements. I did not see any tremendous results and began to taper myself off of them due to cost and due to lack of insurance (switching jobs). I found that I rarely had an asthma attack. I only used my rescue inhaler (Ventolin) when I was sick with a cold. I felt that my asthma was finally under control.
- I had tried for a year to get an appointment with a specialist in Mastocytosis from Brigham and Women’s. I finally got to see her in January 2012. She listened to my case and took blood work and labs and told me she was 99% certain that I had Mastocytosis or Mast Cell Activation Disorder. She also saw some lesions on my skin and had them biopsied. My skin biopsy came back normal; they said that I was just having instances of eczema. I had some psoriasis and eczema back in college, so just thought it was reoccurring. A month later she called me to go over my results and said that I did not show clear cut signs of Mastocytosis in my lab results, but that I may still have Mast Cell Disorder. She said that she knew for a fact that something was wrong with me, but was unsure what it was. She had me carry around a form in my purse for specific tests to be run if I had another episode and to call her if I had another.
- I went almost a full year with no episodes. However, on September 6th, 2012 I was again sick. I was working that day, and all I had to eat was a sub (Salami, Cheese and Pickles) which I have eaten often. I was locking up the bank around 7:15 pm when my stomach started severely hurting. I immediately sped home because I didn’t want my coworker to be frightened by my episode. I drove home and tried to calm myself down and telling myself it was in my head. Then I started to sweat. My skin started to get itchy but I did not have any hives. I ran into the house and had severe diarrhea and was dry heaving. The sweat was so bad it was dripping off on my face into the toilet. I gave myself the EpiPen and then my hands started to clench up and I had no control of them. I couldn’t straighten them out. I asked my boyfriend to call 911. I was given Benadryl by shot in my arm because the ambulance couldn’t get an IV in me. The hooked me up to the heart machine to keep an eye on my heart. At the hospital I was just ignored and sat around for 2 hours before I asked to see the doctor and be sent home. The doctor just said “You understand, this is beyond the scope of the ER.” He gave me Prednisone at the hospital, which I took. And also gave me Zantac, which I refused. I had noticed that when I was on a regimen of Zantac and Zyrtec to held seize my symptoms that I gained a lot of weight and had even more severe, uncontrollable sweating. And my acne was disgusting. I stopped taking the Zantac and it all went away. He sent me home having taken no blood, doing no labs. They said they were going to do an EKG but did not. He gave me a prescription for Prednisone which I did not fill.
- So now I am here: I have no idea what is wrong with me, and I feel sick every day. I am always tired. I live in constant fear that this is going to happen again and I won’t be quick enough and I will end up dead. I am unable to sleep through the night, I have constant abdominal pain, and have hives daily. I very rarely have a bowel movement and if I do, 9 times out of 10 it is diarrhea. My hair is still falling out in clumps and I have severe heartburn. I am constantly drinking water, but told I am dehydrated. This is destroying my life and I need answers. I feel like it is affecting my work and my personal relationships. I no longer want to leave my room, but I do not feel safe travelling far from hospitals or actually laying down to go to bed. I am scared.
- Also notable was I had to be seen by a doctor regarding my tongue. It was very swollen and sore, and I had a bubble on it that was white, then black, then back to pink colored. The doctor thought it was thrush and I was given a rinse. It went away for a few days and came back. It felt as if my tongue was split and it was very difficult to swallow, chew or eat. I have a Geographical Tongue. Usually it is white and raised when I am sick, and it was like this at the time I discovered the bubble.
- Also since this began I have had ingrown toenails. I have had to have the toenail surgery twice. They grow so fast. I have never had an issue before.
- I am constantly stressed and irritable. Any time that I have a stomach pain I feel like I am going to die. I have a very weak immune system and seem to always get sick. I get everyone’s colds, I get the flu. I am literally always sick. I am always depressed and do not want to speak to anyone, see anyone, and do anything. I do not keep up with chores, do not enjoy activities, and do not see friends. I no longer have a sex drive and haven’t in about a year and a half. I am very depressed and literally just want to sleep and stay in bed. I constantly wake up during the night and cannot get a good night’s rest. All I want to do is sleep. Work is getting increasingly difficult. I have also become obsessed with finding answers myself because no doctor has been able to give me an answer. I do not think this is in my head. I have become obsessed with the show Mystery Diagnosis, and with researching my symptoms online.