Hello. Just a quick introduction, a fairly boring story, and probably a few scattered thoughts.
David, 44 (for a few more weeks).
November 2016 I woke up with a little fog in the left side of my left eye. Ignored it and over the next two weeks it slowly started moving more towards the center. Went to my family doctor who saw nothing but referred me to an ophthalmologist. Went the next day and the ophthalmologist said the gel in my eye was turning to fluid and it was just a natural sign of aging. Told me to come back in a year. A week later it’s getting worse so I find a different ophthalmologist who examines me and says I have mild optic neuritis. Tells me he wants to see me again in two weeks and sends me on my way. A week later, I can hardly stand it and tell him I need to come in. Go in and he looks at my eye and says I need to go to the emergency room for solumedrol (sp?). I go to the ER, and they instantly admit me to the hospital. Good times. I got a lumbar puncture, 2 MRIs, and enough blood tests to qualify me for a mission to mars. For the first time the letters MS come up and of course, terror ensues. Results come back and every single test is negative. No oogly oogly (whatever) bands in spinal fluid, perfect blood work, and a clear MRI with the exception of a few spots that match another MRI I had 10 years ago and are also in “non MS” areas.
Back to to the eye. Every single report I’ve read about someone having optic neuritis ends with them saying some or most or all of their vision returned. Mine has not. Legally blind in my left eye. I have great perriferal vision, but central is nothing but light, and I hallucinate out of that eye constantly. Also have affront pupillary defect in that eye now which means I’m basically a vampire and to be in the sun requires very dark wrap around sunglasses.
6 months later, which is now July of 17, my neurologist (assigned to me at hospital, forgot to mention that) wants another MRI which comes back identical. He tells me the optic neuritis happened for an undetermined reason and they no further MRIs would be ordered by him and that the only reason I needed to ever come back was if I was having problems. He stated I do not have MS and have nothing really to worry about.
Summer cruises by by and going into winter I start complaining about my eyes. Something just doesn’t seem right. Trouble focusing on things, trouble seeing clearly, etc. basically the only time I see good is when there isn’t high contrast between two objects. Things like browsing shelves in stores is nearly impossible because everything blends together. I make an appointment at the Cleveland clinic because honestly, I’m tired of hearing people say go to the Cleveland clinic. Anyways, eyes are fine, nothing to see here, have a good day, and move along. Of course, the eye test is black letters on white background. Pretty much the best contrast you can get. So I go home and, well, I just go home.
Merry christmas, happy new year, blah blah bla. Coming out of winter I start to notice any thing I do exhausts me. I’m sore much easier than ever in life, I stagger around like I’m hung over (even when I’m not) and all I want to do is sleep! Changing from one state after being in another for a long time is very bad. The easy example is first thing in the morning. Trouble getting out of bed and bumping into things on the way to the bathroom. The trickier example is after driving for 4 or so hours straight, I can pull into a gas station perfectly fine, but once I get out of the car, I feel like I’m stone drunk! I stagger, swerve, and have trouble walking a straight line. It passes, but sucks and is embarrassing.
Next comes the burning man syndrome. For a few weeks, my right forearm feels like it has a chemical burn on it. Mild, but comes and goes. Starts to get worse and I notice when it’s bad, the left one then starts burning. Then when both left and right are bad the left shin starts burning! Mostly it’s the right forearm. The burning sensation moves around and goes from feeling like a sunburn and very general, to a red hot poker being pushed into one spot. Fun stuff.
So it’s April, I give up and call the neurologist and get a rather quick appointment. He listens to my story and says he fears I may be transitioning into MS. orders a brain and spinal MRI, but says one strange thing that has been bothering me ever since. He said if he sees anything on the MRI he doesn’t like, he will call and have me come in for a 3 day solumedrol treatment before my follow up results appointment. That was kind of scary to hear I put that way. Especially since my insurance mandated the MRI had to wait a minimum of 2 weeks before they could do it. MRIs are May15th.
Anyways, that went way longer than I expected. I’m sure I missed some points but it’s the first time I’ve actually written the entire story out. If you’re still reading, I’m amazed. Thank you, and have a nice night.
David, 44 (for a few more weeks).
November 2016 I woke up with a little fog in the left side of my left eye. Ignored it and over the next two weeks it slowly started moving more towards the center. Went to my family doctor who saw nothing but referred me to an ophthalmologist. Went the next day and the ophthalmologist said the gel in my eye was turning to fluid and it was just a natural sign of aging. Told me to come back in a year. A week later it’s getting worse so I find a different ophthalmologist who examines me and says I have mild optic neuritis. Tells me he wants to see me again in two weeks and sends me on my way. A week later, I can hardly stand it and tell him I need to come in. Go in and he looks at my eye and says I need to go to the emergency room for solumedrol (sp?). I go to the ER, and they instantly admit me to the hospital. Good times. I got a lumbar puncture, 2 MRIs, and enough blood tests to qualify me for a mission to mars. For the first time the letters MS come up and of course, terror ensues. Results come back and every single test is negative. No oogly oogly (whatever) bands in spinal fluid, perfect blood work, and a clear MRI with the exception of a few spots that match another MRI I had 10 years ago and are also in “non MS” areas.
Back to to the eye. Every single report I’ve read about someone having optic neuritis ends with them saying some or most or all of their vision returned. Mine has not. Legally blind in my left eye. I have great perriferal vision, but central is nothing but light, and I hallucinate out of that eye constantly. Also have affront pupillary defect in that eye now which means I’m basically a vampire and to be in the sun requires very dark wrap around sunglasses.
6 months later, which is now July of 17, my neurologist (assigned to me at hospital, forgot to mention that) wants another MRI which comes back identical. He tells me the optic neuritis happened for an undetermined reason and they no further MRIs would be ordered by him and that the only reason I needed to ever come back was if I was having problems. He stated I do not have MS and have nothing really to worry about.
Summer cruises by by and going into winter I start complaining about my eyes. Something just doesn’t seem right. Trouble focusing on things, trouble seeing clearly, etc. basically the only time I see good is when there isn’t high contrast between two objects. Things like browsing shelves in stores is nearly impossible because everything blends together. I make an appointment at the Cleveland clinic because honestly, I’m tired of hearing people say go to the Cleveland clinic. Anyways, eyes are fine, nothing to see here, have a good day, and move along. Of course, the eye test is black letters on white background. Pretty much the best contrast you can get. So I go home and, well, I just go home.
Merry christmas, happy new year, blah blah bla. Coming out of winter I start to notice any thing I do exhausts me. I’m sore much easier than ever in life, I stagger around like I’m hung over (even when I’m not) and all I want to do is sleep! Changing from one state after being in another for a long time is very bad. The easy example is first thing in the morning. Trouble getting out of bed and bumping into things on the way to the bathroom. The trickier example is after driving for 4 or so hours straight, I can pull into a gas station perfectly fine, but once I get out of the car, I feel like I’m stone drunk! I stagger, swerve, and have trouble walking a straight line. It passes, but sucks and is embarrassing.
Next comes the burning man syndrome. For a few weeks, my right forearm feels like it has a chemical burn on it. Mild, but comes and goes. Starts to get worse and I notice when it’s bad, the left one then starts burning. Then when both left and right are bad the left shin starts burning! Mostly it’s the right forearm. The burning sensation moves around and goes from feeling like a sunburn and very general, to a red hot poker being pushed into one spot. Fun stuff.
So it’s April, I give up and call the neurologist and get a rather quick appointment. He listens to my story and says he fears I may be transitioning into MS. orders a brain and spinal MRI, but says one strange thing that has been bothering me ever since. He said if he sees anything on the MRI he doesn’t like, he will call and have me come in for a 3 day solumedrol treatment before my follow up results appointment. That was kind of scary to hear I put that way. Especially since my insurance mandated the MRI had to wait a minimum of 2 weeks before they could do it. MRIs are May15th.
Anyways, that went way longer than I expected. I’m sure I missed some points but it’s the first time I’ve actually written the entire story out. If you’re still reading, I’m amazed. Thank you, and have a nice night.
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