Im a mystery case- jap. encephalitis, Abnormal EEG, seizures- please help.
This is my desperate attempt to find someone that can help me. PLEASE read this and reply if you know anything. Something is killing me. Im a 22 year old Female with some type of mystery disease. In 2007-2008 I lived in a village in Andhra Pradesh, India working at an orphanage and with the local leprosy colonies. Prior to living in India, I danced Russian Ballet for 12 years, ran a marathon, competed in Judo, played team soccer and summited a lot of mountains- I was really healthy and super active. But in Nov. of '07 I fell very ill, very suddenly in India. Within less than 2 minutes I went from feeling completely fine to shaking, vomiting, excessive sweating, extreme fatigue and then developed a severe headache. Because I was so far into the jungle, we didnt have any medical care options other than a lot of prayers and waiting it out (Some of the locals thought I had malaria or some other mosquito disease- as was somewhat common in the area). After about 8 days I started to feel better and got out of bed and back to work. I didnt ever feel back to "normal" (I felt not as strong as I used to be, sometimes a little dizzy, and occasional headaches) but I didnt pay much attention to it because I had other things to worry about. In April of '08 I returned to the U.S. Four months later I started to get really nauseous all the time and starting vomiting a lot. The vomiting eventually died down a bit after about 2 months, but the nauseua continued and worsened and I became really dizzy all the time.. with ringing in my left ear. I tried to ignore it and continued to run, dance and practice martial arts- even though I felt a bit weak. The nausea was really bad and I started having visual blackouts 5-15 times a day (where I would still be concious, but for 3-25 seconds my vision would almost go completely black). Then on October 3, '08, I woke up with the worse headache of my life. I felt like my brain had grown in the night and it was trying to break out of my skull or something. Most of the pain was localized in my forehead area. But then.. the headache didnt go away. After three weeks of severe head pain every single second of every single day I went to the hospital. They didnt find anything but said I might have sinusitis (even though I was NOT having a sinus headache... NOT AT ALL) My visual blackouts became more frequent and started when I was just sitting down or not doing anything at all (never laying down though). My stomach started to hurt real bad too. Then, things got worse. A month after my headache began, my hips started to hurt really bad. I mean REALLY bad. I couldn't sleep, and they hurt so bad (mostly the left) that it was hard to walk ( the pain was the VERY worse when i was close to something cold, ie, by a freezer or outside). My doctor started taking a lot of test ( 73 vials of blood in all!), and everything looked "fine". I couldn't do anything. I quit my job and spent the entire winter inside of my house just trying to get from day to day. Then, in April of 09 my stomach started to hurt REALLY bad. So bad that I finally had to go the E.R. I had never felt so much pain in my life. I passed out 3 times and then had a full grand mal suizure before they could get me a CT scan of my abdomen... turns out my whole abdomen was full of internal bleeding. The surgeon thought that it was an ovarian cyst or something, but was shocked that it wasnt and "Found no cause for the bleeding", He said he removed almost 1200 cc's of blood and that it was a complete mystery as to where it came from, and that I should watch for symptoms for if or when it would happen again. My doctors decided I should see an infectious disease specialist. So, lucky me, I was seen by a really good one, who was also an expert in international diseases (which all my doctors by then had decided was the problem- that I had gotten something in India)... my family had to take me all the way across the country to see him, by the time I got there I was so sick I just stayed there for 2 months. But he couldnt figure out what was wrong with me either. By june of '09 I had lost a lot of weight (I went from a healthy 130 pounds to 102 - Im 5'7)and developed even MORE symptoms.The specialist thought that I was infected with Japanese encephalitis, but the blood test results were negative. He said that there was no way to know if thats what it was or not because it had, by that time, been well over a year and a half since I "probably" was infected. I did however test test very, very positive for an acute infection of the human parvovirus. But it was a past infection and the DR. didnt know how long ago (evidently that can cause a LOT of sever health problems when adults catch it). I also tested "barely negative" for dengue fever. I became so sick last summer that I could couldnt even walk. I was either pushed in a wheel chair or carried almost everywhere. I was so tired that I was sleeping on average 19-21 hours a day. I couldnt even lift quart of milk without shaking like crazy...and the headaches, joint pain, nauseau, blackouts, and stomach pain were so bad I could barely move. Also, I began to have terrible problems breathing. I felt SO out of breath all the time. I would pass out completely if something spooked me or surprised me at all (just unconcious for 5-60 seconds- sometimes with seizure like movements involved). Dark circles under my eyes became so dark that I scared children, (my friends lovingly called me a Vampire because of the almost bruising undermy eyes and how deathly pale I look). Anyway, here I am. The breathing problems have mostly gotten better, but as of this last month and a half I have developed severe chest pain ( hurts when I breath), everything else is the same, except for the arthritis like symptoms seem to have gotten a lot worse this winter (spread to more parts of my body). Im only having visual blackouts about 10 times a day now, and I can walk now (not far), and Im not sleeping nearly as much as I was last summer. I had an EEG done two weeks ago and the results were VERY ABNORMAL. The Dr. thinks Ive been having seizures so he prescribed me with topamax. And, I figured out that if I dont eat any gluten products (AT ALL) my stomach doesnt hurt so bad. so thats good news. But the pain is so bad. My head hurts so much! And finally, I feel like I am starting to get depressed about it all. I fought it for so long with optimism, but the pain is so much that I dont know if I can continue much longer. It breaks my heart because I love my husband so much, and I want to be the girl he fell in love with, but I cant even function. I've been ill for 18 months now. Please, please help me. In any way, if you know ANYTHING about this, or any thoughts or similar experience. Please.
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