- CASE FILE
In 2014 I woke to excruciating pain in my left eye that spread to my right. Add in daily migraines, brain fog, weight loss and joint pain.
ABOUT THIS CASE FILE
A little over five and half years ago I woke up with what felt like an ice pick driven through my left eye. I had severe migraines accompanying that eye pain. By the end of each day my eyelid was shuttered down and slightly swollen. The pain was incredible. I was so sensitive to light.
It was on a weekend, so I went to a local Optometrist who diagnosed me with Iritis. The medication did nothing to help me. Then I went to the eye clinic at the local Veteran Affairs repeatedly. I was told different things and given different things. I was told pink eye at one point. They could never figure out why I was in pain or what was going on.
I still had to work, I was a single mother. My vision was getting bad in that eye. I had a scintillating scotoma. I didn't know what it was at the time, I just kept telling the doctor it was almost like it was a "C". Then I started experiencing seeing my heartbeat in my eye. It was white. That was freaky and I was lucky enough to have it happen while I was driving. Also, my left pupil no longer dilated when it should. With all this, they NEVER dilated my eye to look in the back. I was treated like I was faking it and looking for drugs or something, when I refused everything. She offered when she got frustrated with me.
End of February my Mother sends me to an Ophthalmologist at Ohio Eye. I am literally his last appointment of the day. They had shut down their large equipment. He talks to me, looks at my eye and then dilated it. When he looks at the back of my eye, he seems angry and asks me again how long this has been going on. Then tells his nurse to turn on several different machines so they can warm up again. He says you must have been in a lot of pain and I cried a little. A doctor saw. He asked who had been treating me and how many times I was seen. I was diagnosed with Papillitis. I lucked out, his nurse was the wife of a Veteran Representative. She helped me force them to attempt to treat me. They still ultimately did nothing at that time EXCEPT figure out which migraine medication would break my migraines. That was an accident and a HUGE help. They did absolutely nothing for my eyes and again treated me like I was making everything up. I ended up at OSU like Ohio Eye warned me I might.
The OSU Ophthalmology had to prescribe steroids which the VA did not even after I was hospitalized over the weekend. They just sent me on my merry way with migraine medication and said my eye would be fine even though my vision was not getting any better.
March comes and my right eye starts acting up. I immediately head to the OSU ER. They do a spinal tap and my white blood cell count is through the roof but everything else is fine. They hospitalize me and while I am there two blank spots appear in my vision. I also have the worst migraine I have ever had. Lots of tests that never amount to anything. The neurology team suspect NMO or MS. Since then all tests have been negative. My right eye was Posterior Scleritis.
OSU gives me more steroids, which helped. It made it so my eye recovered quicker than last time. My eyes have never been the same. My head has never been the same, I have a daily migraine I pretty much wake with. They seem to come from my eyes. My eyes hurt basically from the time I open them and just get worse through the day as they get more tired. That ice pic feeling still comes sometimes. I have gotten used to the daily migraine. I would rather always have it than go without it. That brief period without makes me realize how much it hurts. Even my body has just been weaker since all this happened. Something changed, I do not know how else to describe it.
In March 2018 I began to lose weight without making any changes. At that time, I was about 155 pounds. I am 5' 6.5", so that is a little bit much on my frame. Obviously, I would be a bit excited. By the end of July 2018, I had dropped down to 121.
Fall 2018 I noticed things like brain fog and hair loss. The brain fog was so bad that my uncle noticed at Christmas time when I *tried* to play Scattegories. I could maybe fill out two or three items out of ten. I am an intelligent woman and I just could not think of anything. As far as the hair goes, I had a small bald patch forming in the front. My hair was thinning in the center.
I go to the VA for medical care, although my Primary Care Doctor is out in town. My PCM has run many tests and put in referrals for specialists. The VA has had me see the specialists internally. So far, the endocrinologist has not found anything. During the MRI they found a Pituitary Cyst that they classified as a Rathke's Cleft Cyst. This was not there last year. They do MRI's each year to check on the Pineal Cyst, so I imagine they would have seen the Pituitary Cyst before.
During the fall I lost another two pounds when I was trying to keep the weight on. I was down 119 in December 2018. Fast forward to July 2019 and I have dropped down to 113. Granted there has been added stress. Gastritis made it so I had to eat bland for about a month. During that month I lost two pounds.
In July I went to my PCM and asked her to prescribe Ensure. The VA nutritionist called and talked to me about my eating habits, which they thought were fine. They agreed that adding Ensure would be a good idea since the doctors have not figured out what is causing the weight loss. So, I am drinking Ensure Plus twice a day in addition to my meals. I am now up to 116.
These weights are based on my home scale, first thing in the morning. They still have not figured out what is wrong with me and all this began in 2014. The neuro-immunologist I saw at OSU in 2014 told me they were basically just waiting on my body to declare itself