I could use some advice on something that’s been going on lately.
A few years ago, I started getting sick. My legs were weak and I was falling all the time. I couldn’t swallow without pushing up food and a whole host of other things. My friend paid for me to go to a fancy neurologist. This turned out to be a big mistake. He spent a half hour on the phone talking with someone about a party they were going to later that evening. Then he looked me over for less than five minutes and told me I had a clean MRI and so I was perfectly fine. He said the whole thing was in my head and that now that I knew, I was cured.
This messed with me for a while. I actually tried to walk without my cane and fell several times. I finally saw another neurologist who was wonderful. He did a full workup, checked me out talked with me, and at the end told me I had cerebellar ataxia. He gave me a good plan with PT, OT and everything else I needed to learn to live with my disease.
The problem is this letter from the first neurologist keeps coming back to haunt me. I applied for disabilities and the board is convinced that I’m faking it after I accidentally included his letter in my file. They keep giving me problems about it and are insisting that I get another neurologist to confirm.
The problem is that this makes it impossible for me to get a neurologist to talk to me. The first one I saw was at the same hospital as the guy. He saw the report when he looked me up and that shut down the appointment. He just read what the other guy wrote and gave me the same lecture. The second guy I saw was at a different place. But he saw a note in my disability forms and once again wrote me off without even looking at me.
So now I don’t know what to do. On and immediate level, I need to find someone to help me with my disability paperwork. I am getting stressed out and terrified of going to the next meeting.
But more importantly, this is tearing apart my life. Since this meeting I have been close to a total breakdown. Once the idea that this could be all in my head got itself stuck in my head it won’t leave. I keep questioning myself all the time. I spent hours reading everything I could on conversion disorders to see if it was true and this whole time maybe it really was all in my head. I read the DSM over and over again. I can clearly see that I don’t have this. I don’t fit the criteria listed. My wife, who is a psychologist even told me I don’t fit for this. I have seen several mental health professionals l since I first got sick and none of them have even mentioned this. I spoke with a psychiatrist who did a full evaluation and told me that I most certainly do not have a disorder and that I don’t fit any of the symptoms.
But even so this is taking over my entire life. I told you before how my anxiety and depression had gotten bad the past few weeks, and now everything has hit a breaking point. I am either so depressed I don’t want to get out of bed or so anxious I can’t function. I honestly don’t know how much longer I can keep holding on with this. I have actually tried to walk normally after repeating to myself that it was all in my head. I have fallen several times.
I can’t even talk to anyone about it. I worry that once I put that out there it will always be the back of people’s minds. It’s a bell you can’t unring. But meanwhile I don’t know what to do.