Oscillopsia – SSI – I have Had Zero Motivation

Wow. I just have no motivation anymore. I am just so tired. I don’t want to write and when I do I can’t think of what I want to say or how to say it. My cognitive function is just horrible. I literally feel like I would achieve just as much if I was in a coma. All I can think about is getting Lemtrada. I am just hoping that the steroids I get with it are enough to start fixing this vision crap, I am just so over it.

Speaking of vision, I saw an ophthalmologist the other day, well sort of. So I checked in. Nurse sat me down and asked me basic charting questions. Then the doctor came in and looked at my eyes. He said it was oscillopsia and then stepped out. The nurse came back in and put the drops in my eyes to dilate them. Then she moved me back in the waiting room and I was still thinking about the oscillopsia thing. Then I realize I had to go to the restroom. The one on the floor I was on was occupied so I went downstairs. Then when I came out I saw my brother (who gave me a ride) in the food court so we went home…

Later I got a call from the clinic asking where I went. Oops! I just left! They were waiting for my eyes to dilate and I guess I just lost myself on my “quest” to use the restroom! Wow I felt so dumb! So I have to go back in a week but I am not really sure why. We got a diagnosis and they confirmed there is nothing you can to to alleviate it so what is the point? Well who know, I guess I will find out. I got nothing better to do haha….

So on another note, let me give you an update on the Social Security mess I am in. So let’s see, they stopped my benefits in January 2015 and was told I owe every penny I ever got from Social Security back ($25,xxx). In March I finally was able to get to the SSA office where I filled out the paperwork to request a reconsideration on my claim. “If you don’t hear back in 2 weeks give them a call”. I did but they told me they see no record of me ever even going in. So I went back and refilled out my paper work. They tell me the same thing and when I call they tell me the same thing again! So as I keep receiving threatening “give us money” letters I keep writing them and calling them. No luck. Last lady gave me a list of all the forms I need filled out and told me to send them in. So I filled them out and made copies of everything and sent it all in via priority mail so I could track it. A couple days later I get a call from the SSA asking what I wanted them to do with all that.

“what do you mean?”
“well you already have a claim pending, since March, so do you want us to cancel it and start all over?”

I explained what has been going on and he said he would send everything back to me. So apparently, that first form I submitted in March did actually go through but everyone I called did not seem to know what they were doing and so they sent me on a witch hunt!

I forgot to ask how much longer this should take because they told me “about 2 weeks” in MARCH and it’s almost August! I need financial support, my health is only getting worse and instead of focusing on my health I am constantly stressed about how I can scrounge up enough cash each month and next month I think I am totally screwed… Social Security is the “best”…

5 thoughts on “Oscillopsia – SSI – I have Had Zero Motivation

  • July 27, 2015 at 12:12 pm

    Dear Matt,I'm sorry things are hard. I think you need a new lawyer for ssi. As far as the ms goes, there is a device called the PONS that is AVAILABLE TO YOU in 2016 for vestibular problems .For people like you ,it literally brought eyesight back to normal and fixed walking problems.It has beat out stem cells by miles.Check it out on youtube.Also LOOK ON CLINICAL TRAIL .GOV. IT'S ON THERE.I still think once lemtrada hits your going to feel better.I will be emailing you soon so please look at your emails next week.

  • July 29, 2015 at 7:34 pm

    I asked my doc about lemtrada and he would not give it to me .He said it was risky .I thinking about other options. Are you sure this is the path for you .I wish you the best .You and your doc have to make the decision.It comes with serious risk.I have decided to take aubago and diet.I might do nothing.No one can tell you what medication.All this stuff is risky.I don't know IF the risks are worth it.I 've been on tysabri extended dose and I have to come off.They only thing I know is that salt ,popcorn and milk and alot of bread make me worse.Good Luck and god bless

    • July 29, 2015 at 9:48 pm

      I have exhausted all other options so yes, I feel it is. Too risky if you have not tried multiple medications first but for someone like me, the only way a doctor could say "it's too risky" is if they are just making up an excuse to hide the fact that they have not educated themselves about how to use the medication. My doctor has so I am as comfortable as can be.


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