Hi Everyone

Hi my name is Bridgette and I'm 28. I live in Vermont w/ my parents. My parents help me every step of the way. My health issuse started when I was 7. I had a stroke and from that I lost the majority of my vision, developed epilepsy, developed chronic migraines and became uncoordinated and unbalanced.  I have seizures everyday and when I have these seizures I loose all of my vison and during these seizures I see halucinasions even w/ my eyes closed. After the seizure activity stops my vison is blury for a minute or 2. Then it slowly goes back to normal. The seizures first start off as a visual ora that looks like colored pin wheels and fire works and is acompanied by weakness. If I don't sit down when I see this ora it developes into a physical seizure. They can last up to 3 minutes I also have  migraines about 4 to 6 times a week and I suffer from severe depression and chronic fatigue. My epilepsy is progressively getting worse and more unpredictable. I also have a rare type of gastroesophigial reflux disease. I don't get heart burn from it but sometimes when I eat my esophigus closes off completely and I can't swollow what I was eating, I can't swollow saliva or even air but I'm still able to breath. It does feel like a chocking sensation though. Every 4 years I have to get my esophigus stretched because it progressively gets worse. After the procedure is done I'm fine for the next 4 years. At the age of 11 I was given depicot for my seizure and from that I developed hepatic necrosis(roting of the liver). There's no known cure for this. My liver levels were through the roof. If I had gone one more week w/out the experimental treatment they gave me I wouldn't be here right now. I was just days away from getting a liver transplant. My liver is fine now but I can't eat any fatty foods because of all the meds I take for my epilepsy. At the age of 18 I was given an experimental seizure medication called gabapinten or neuontin. I was told it would get rid of my seizures and wouldn't make me sleepy, which is why I wanted to take it. Because of that medication I had 200 to 300 small seizure a day. I was out of high school for 7 week. During those 7 weeks I developed strep like symptoms and during all that seizure activity I lost my vision. After those 7 weeks my vision went back to the way it was before all of that started. I started taking the same old meds that were making me sleepy again but I noticed it wasn't working the way it used to. Chemically speaking something had changed in my body and I had to up the dosage for them to work properly again.I also had to add an add-on medication that would make that medication work better and control my seizure activity. At the age of 21 I noticed that I started loosing feeling in my feet. When I was 24 I was finally diagnosed w/ peripheral neuropathy(loss of feeling in the limbs). I can't feel anything below my knees anymore. My thighs arms and hands are fine for now. At the age of 28 I was diagnosed w/ a mild form of opthomoplagia(paralisis or the eye muscles) and a rare type of mitochondrial disease called MIRAS (mitochondrial recessive ataxia syndrome). It was hard news to take but at the same time it was a relief because I finally knew what was causing all these problems. Once I know what's going on with me I can deal w/ it better. My doctor at the Mayo Clinic said that only 8 other people in the world have MIRAS, so if there's anyone out there w/ MIRAS, I welcome your replies or emails. You are welcome to email me at greeneyedbridge@yahoo.com

This was just the short version of everything I've been through. I wish all of you well.