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Going blind, help me figure out what causing it

I'm posting this in hopes of someone reading this story who can point me in the right direction of getting some answers. If you are a doctor or know of a doctor that may know of a similar story please let me know what my next steps could be. (What kind of specialist to see next).



Ever since I was young I've had bad headaches, so bad that throwing up afterwards would be the only relief. In October 2002, while 3 months pregnant I was in a car accident that collapsed my left lung and probably did a lot of damage to my back and spine. After giving birth I had numbness in my left leg. I'd say about 10 years ago is when my other health symptoms started.



At first, I started going to the doctor for these weird panic attacks. I'm not sure if that's what it was but out of nowhere, I’d start sweating and shaking, like I had low blood sugar. I still have them every so often. We didn't have insurance at the time, so I went to friends in need to see a doctor. While there for a visit, they also noticed (and didn't do anything about) the fact that one side of my body has a different blood pressure and temperature than the other side. Shortly after that when I would lay down at night flat in a bed my heart would start racing so I started sleeping on the couch sitting up. One doctor said it could be phantom heart burn so each time it would happen I would eat a tums. Then shortly after that the right side of my face and neck would ache and go numb. I would have horrible headaches that felt like the top of my head would explode. Most of the ending up in throwing up to relieve the pressure.



At age 29, my hair started thinning but more so on my right side. I went to 3 different dermatologist that couldn't give me an answer. I had seen several doctors by this time that had checked for thyroid disorders, but nothing came up in my blood work. I was also on the depo shot for endometriosis, so most doctors blamed any symptoms on that. That’s also about the time when a weird bubbling in my chest would start, like air bubbles. I went to several doctors to have tests ran on my heart and they all came back great.



A few years later in May of 2015, I noticed my right eye twitching at work. It bothered me the day before, it felt like something was in my eye, but I didn't think much of it. The next morning, I woke up to a gray spot in the corner of my right eye. I went to urgent care, but they sent me to Regional Eye Care. After a full day of tests, and the word brain tumor tossed around, they thought I had optical neuritis. He sent me for 3 days of intravenous steroids, an MRI and more blood work. By the end of the day the gray spot in the corner turned into as if someone pulled a shade down in front of my eye, I only have vision out of the bottom portion of my eye. After all the tests, no one could tell me what caused it. They said it’s common in people with MS but I don't have it. I saw a neurologist and had a spinal tap done but that looked good too. My neck really started swelling by this time, so badly that I couldn't lay my head down on a pillow. Each time I would lay my head down, my head, arms or legs would go numb in the middle of the night. My face and eyes would swell also.



In October 2016 it happened again my in left eye. I went back to the eye doctor and had the 3 days of steroids and another MRI. Same thing, no answers everything looked good except for obvious swelling around my eye nerves. I went to Dr. Newman at UVA and he thought it was strokes caused from migraines. But he still didn't really know for sure. God forbid you tell a doctor what you think It may be. I went to a local ear, nose and throat doctor to see if I had allergies and all his tests looked good. It wasn't as bad in my left eye, the gray spot stayed in the corner. I could still see well. Dr. Newman told me that it was highly unlikely to happen again. I went to another neurologist and after a few more tests and an ultra sound test done on my carotid arteries he said there was nothing else he could test for. The swelling in my neck is bad. It hurts at the very top of my spinal cord in the back of my neck. I've told the doctors about this, but they ignore these symptoms. I was just told to start taking aspirin.



In July 2017 I got off the depo shot. In July 2018 I had a partial hysterectomy. I felt great finally for the first time. I had less head aches and felt better in general.



Three weeks before Wednesday January 30th I started having these weird hot flashes. I'd had an infected tooth and was having tooth pain, so I went to the dentist to get antibiotics. I had severe jaw pain, pain and swelling in my neck and face, as well as headaches. That carried on for about 3 weeks until Wednesday January 30th when I woke up and my left eye's little gray spot was no longer in the corner, it had spread across the center of my eye. I can still see but it's like having something constantly blocking my view. Like a greay fog in the center of your eye. I went to the eye doctor and they sent me to the neurologist. This time they didn't send me for steroids. As they sit there and shake their head saying, "I just don't know", it doesn't make you feel any better. The eye doctor got defensive when I questioned his diagnosis, stating that it was optic neuritis and that was all it could be, until he read Dr Newman's diagnosis and suddenly it wasn't optic neuritis. How petty. This is about my vision, not a doctor’s ego. I need something that will prevent this from happening again. I’m afraid to go to sleep. Each time I do I'm afraid I'm going to wake up with even less vision. I need help preventing another episode. The only thing I found in common each time it happened would be neck pain, headaches and a few days later vision loss. Everything in my head feels swollen. Even without a head ache when I sleep at night, the pressure from laying my head on the pillow will wake me up and when I open my eyes to see if I still have my vision it feels like my eyes are asleep and they slowly wake up. It's scary.

No doctor I have seen is willing to put the thought or effort into trying to figure out what is causing this to keep happening since it doesn’t fit neatly into a textbook diagnosis. I don't want to go blind, so if you have any ideas please let me know.
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