My Road to the Correct Diagnosis!

This is my story.


Ever since I was a kid I thought I might actually have a heart problem. I would always have chest pains and feel "funny". In high school, I noticed my hearing would go out, I would not be able to see sometimes, I would see spots at other times, feel faint, and dizzy. I never really thought anything of any of this. I would just sit down and get back up when I felt better.
 Then, in October of 2006, it was just another day of work. I was 19 at the time, everything was going great in my life, and I felt fine that day. I had still been having spells of not being able to feel my hands or they would tingle, I would feel faint, and I would just sit down and put my head between my knees and I would feel okay shortly after. I still never really thought anything was really "wrong" with me. Well, this particular day the same symptoms were occuring. However, it escalated into hyperventilating, major chest pains, and eventually into violent seizure activity.
 This kept happening every single day. I would be taken by ambulance to our local ER. They would draw blood, run MRIs and catscans, and EKGs. They never found anything wrong. Once they even gave me a shot of haldol, which is an anti-psychotic, and it basically put me into a coma-like state for a few hours.
 After this went on regularly for a few months the doctors finally said there was just something wrong with me mentally. They were only panic attacks and I just needed to talk to a therapist and get with a psychiatrist. That really made me angry and upset because in my heart I knew that's not what I needed at all. And this is where our search began.
 I ended up quitting my job at the Veterinary Hospital, which broke my heart. I had worked there for about two years and that's what I had always wanted to do and I loved it. Thinking that I might have had an allergy or something causing me to react since I did work with a lot of chemicals, medications, and what not I started working as a secretary.
My problems still were on-going.
 I went out of state and got tested for allergies, asthma, had chest x-rays, a stress test, ultra sounds of my heart, more EEGs, catscans, MRIs, and went to an ENT. The ENT said that I have Vocal Chord Dysfunction and reffered that I get a bronchoscopy done. So, I did. The bronchoscopy showed that I have a compressed trachea and they were telling me that it shouldn't really have much to do with my problems other than when I'm struggling to breathe that it only makes it harder to do so.
 Well, during all of this my fiancee's dad ended up in the hospital and I went with my fiancee to visit him. There in the hospital I ended up having an attack and I thought I would be lucky to be in a hospital at this time. I ended up in a hospital bed and my parents were on their way. I was coming back to after being passed out and I overheard the doctor saying that he only witnesses episodes like this with people who are on heroin or hard drugs. After going through everything I had gone through, you can imagine how hard that hit me. I couldn't even get angry at the time, I could only cry. How dare he say that! I refused to do any testings and when my parents arrived we signed a release form and left.
 At this point, I was very aggravated and discouraged. I didn't think I'd ever really know why I was having so many problems and I was so drained mentally and physically.
 Finally, we got in touch with an award winning cardiologist. As I was waiting in the waiting room, I had all of my symptoms hit me at once and a bad episode of the violent seizure activity. He looked back at all of my past tests, he ran his own EKG, and he said it was obvious that I had Dysautonomia and Mitral Valve Prolapse.
 Like many others, I had never heard of Dysautonomia in my life! Basically, I have always ran low blood pressure but nobody ever brought it to my attention. Unlike other people, when I stand up my blood pressure drops significantly low which causes me to feel dizzy, light headed, near fainting, or to pass out. He also said I have non-epileptic seizures which are hard to control and we really don't know why they occur...they just do. Sometimes it can be stress and the anxiety attacks can just escalate to that point or usually, especially in my case, they just happen out of nowhere. There are so many other symptoms of Dysautonomia and Mitral Valve Prolapse and unfortunately I have every single one.
 I was admitted into the hospital immediately and that was in January of 2007. I still had doctors that were on call who disagreed with my cardiologist and kept insisting that I get in touch with a therapist! So, I finally did and she signed off within 20 minutes of talking to me stating that I had no mental problems.
 A lot of doctors doubted that I had Dysautonomia and they were disappointed that he never made me do a tilt table test which let's you know for certain if you have Dysautonomia or not. So, my doctor made me take it and the test turned out completely positive. I passed out within six minutes.
 Dysautonomia and MVP can trigger other illnesses as well. In August of 2007, I got diagnosed with Fibromyalgia. It seems as if it's just one thing after another but I try to stay as positive as possible.
 Ever since January, it's been trial and error with medications. Some medications help, some don't. I'm basically a guinea pig as all of us are who deal with this chronic illness. I now take up to 22 medications a day and it helps somewhat but honestly, everyday is different. Some days feel like I'm not on any medication and other days are okay. There is never a single day that I don't experience some type of pain or strange feeling. And there are some days where you just feel these new pains or weird feelings and you totally brush it off because you don't want to complain or bring it up.
 I don't go out much anymore and sometimes I have to use a wheelchair. I'm not able to work which is really difficult for a work-a-holic! If you are just looking at me from the outside, at times, you would never know that I am sick. People don't understand this chronic illness and think because you are young, you "look" healthy, and you might be able to come out of the house that it means you are magically healed. I have lost a number of friends. Sometimes I blame myself for that because I got sick and had to disconnect myself from a lot of things but it's also disappointing when you find out who your real friends are in hard times like these. I didn't have anyone, outside of family, to visit me during my stays in the hospital or even when I'm at home now. It can be pretty depressing if you let it get to you but you seriously have to find a way to not let it get you down. I appreciate the people who are in my life and truly, genuinely care about me. I am not bitter towards the people who couldn't make it to the hospital or don't come to see me. I still love them and I would do anything for them. That's just how I am. I know that a lot of people don't understand and it's not easy to understand it unless you are going through it. It's an everyday struggle but thankfully, I have a great support system and I've met a lot of people online that have Dysautonomia. They help me stay optimistic and keep that spunky part of me alive. They are a huge inspiration to me and I am so grateful to have them in my life!