DIAGNOSIS UNKNOWN

I do not want my blog to turn into a big blah blah about my health issues, but because so many of you have been praying for me I would like to explain what has been going on with me. Also, at this point it cannot hurt to put this out there and hope that maybe someone might have some useful information for me.

Lets go back about two years. I had just started a new job and I knew this job would be very easy on me. After a few weeks there I became so tired and run down. My hands and wrists hurt so bad that I could not even make a fist. Then I developed some white spots in my throat. I went to my family doctor and she did some blood work. She checked for mono and step-both were negative. My blood work did show some sort of infection so I was put on an antibiotic. After taking it I was still not feeling better and was put on two more antibiotics, one which was very expensive. (Thank God for the bank of mom and dad!) I still had the spots in my throat. I then headed to the dentist and found out that I had an abscess tooth. I then went to an oral surgeon to have the tooth removed. He felt this was unnecessary but I felt like this was the root of my problem so he removed it. I began to feel better. Several months went by and I was doing fine. Then one day my hands became very red, itchy and painful. I went to my doctor and she thought it was a chemical or food that I had come in contact with. I got some steroids and Atarax, but this thing in my hands kept coming and going. She told me I had urticaria, which is hives and told me to be thankful it was only in my hands. No sooner did I leave her office for the third time that my feet then became overwhelmed with the hives. THIS IS HOW THE HIVES BEGAN ON MY ARMS AND LEGS. THEY WERE NOT SO BAD AT FIRST. JUST ITCHY BUMPS- UNLESS THEY WERE ON MY PALMS OR SOLES.It was so painful to stand or walk. Then the hives became to cover my whole body. I was sent to a dermatologist. He felt like I was having a reaction to some food or medicine. I began to take a constant journal of everything that I put in my mouth. I could not figure it out. One day when I was having a very bad outbreak I headed to the ER. The doctors there were puzzled and even checked me for Lyme disease. Then one day my hives changed. They looked like they were in my blood stream. They were no longer on the surface. THIS IS HOW THEY BEGAN TO LOOK.(No, I do not look like this every day! LOL! Thank God.) I was scared and thought maybe I had become allergic to my asthma inhaler. I headed of to a different doctor. Two doctors saw me that day. They changed my inhaler but could not offer much more help. The sent me to an allergist. The allergist immediately sent me for a biopsy and massive blood work. There were some disturbing things in the blood work, but nothing that appeared life threatening at the time. However, the biopsy showed that I had vasculitis. When I went back to the dermatologist that did the biopsy he just shook his head and said he was sorry. He is the one who kept insisting that it was a food allergy.He was surprised of the biopsy result. He said there was nothing else he could do and I would have to see another specialist. Well, one evening we were watching Dr. G medical examiner and she was doing a autopsy on a woman who died from vasculitis. So I began to research and it was just to scary to read all of that. During this time I was also having some stomach problems. I had heartburn everyday and my food would stick and I would have to throw it up. So off I went to the gastro specialist. I was put to sleep and had a light put down my throat. Diagnosis- Eosinophilic Esophagus. He said this came from a food allergy! He put me on some different type of steroids. Then I began to do more research. During this time my asthma had also become worse. So with the vasculitis and EE and asthma it was beginning to look like I had Churg-Strauss syndrome. That was so scary. As I drove to work the next morning I cried and cried. I was so scared.This would be a life altering disease that could lead to death. I went back to the allergist and told her about the EE diagnosis and that they said it was a food allergy thinking that maybe the hives WERE a food allergy after all. She (and the other specialist) were and still are very insistent that I have some underlying illness. However, she proceeded to test me for food allergies. Surprisingly I came back with a serious wheat and egg allergy. Also I am allergic to rye, cinnamon, garlic, and pork. So for the past three days I have been living on bananas. Lesson one that I am learning- wheat is in EVERYTHING! Why make white bread and wheat bread if wheat is in both of them! LOL! I nearly walked out of the grocery store in tears. Eggs are also in a lot of things you would not imagine. My allergist still does not think that this is the cause of my hives but the wheat allergy could have a lot to do with my gastro problems. I feel ok except when I am broke out with the hives, which is pretty much every other day. Unless you have had chronic hives you can not even imagine what this feels like. It is like nothing I have ever had to deal with before. Your skin just burns and itches and if you try to take a shower the water just makes the burning increase. Most days it is just hard for me to get up and go to work. When my feet are hived it is the worst. I am on so much medication that makes me sleepy. I have prayed so much that changing my diet will make a difference. Of course I am still scared about the vasculitis diagnosis and I guess I will need to go to a specialist for that. Somehow I feel that all of this ties together. My allergist did do blood work to rule out the Churg-Strauss and my numbers looked ok for that. It has been 1 year and 4 months since my first hive episode. I am very tired of dealing with this. Some days I just want to give up. I can cope pretty well if I double my medicine dose and then lay down to rest. When I am active the hives are much worse and resting does my body well. Sandy, my dear hubby really wishes that I was able to quit work until we figure this all out. But this is just not possible at this time.

THANK YOU ALL SO MUCH FOR ALL OF YOUR PRAYERS. At this point prayer seems to be all I have. I will update you to see how this wheat and egg free diet works for me. It is very difficult considering that I cook for a living and am around food all day. Every night I pray that God will give me strength to not touch or taste the food. It may sound silly but it is hard to make 200 cookies or pizzas and not take a taste. This week will be a challenge, but I feel confident that I can do this!

((hugs to all))

sorry so long and i am sure that i left a lot out :(