Eowyn:

No I have not seen a physiatrist. What exactly do they do when compared to a chiropractor or an orthopedist?

Jo*mar:

I did have an MRI done way back in 2006. I had to beg my neurologist to give me one. After it came back clean he told me there was no way that anything could be wrong with my brain. I was dumb enough to believe him.

Mark in Idaho:

I am glad to hear that you are living a self-described "very full life" despite your symptoms. I know that it must have been very hard for you and you have displayed a great deal of strength in overcoming this hardship.

I wish I could say that same thing about my life. I promise you that I am not a weak person and I have tried harder than anyone will ever know. After 8 years of this I have come to the conclusion that I cannot live with these "limitations" if that's what you want to call them.

I can't see anything. I took an eye test and they said my vision is fine. Nothing is clear, I can't track movement, and I can't focus on peoples faces or objects in front of me. I can't even read. I wanted to be a writer, I was majoring in English, I got into UCLA and UC Berkeley, now I can't even read a magazine. I've heard about vision therapy but my Dr. told me that my brain doesn't know where my body is in space and doesn't think vision therapy will help me. I don't know what to believe. I just know that everything I do seems to make things worse. How do you adjust your life to that?

I can't eat 95% of foods, literally. Its not an exaggeration. Eating almost anything causes HORRIBLE reactions in my head like you would not believe. Its like the computer crashes. I can't eat anything sweet, not even fruit, no bread or pasta (even gluten free quinoa pasta), can't drink juice or milk or ANYTHING. I have eaten the same handful of foods everyday for years. I have no desire to eat anymore, I just do it to stay alive. Everything that I put in my body, even herbs or herbal tea, medicine of any kind if it involves my digestive system can be detrimental. My Dr. says that the part of my brain that the vagus nerve fires into when my digestive system is activated is damaged and can't handle the stimulation. I have also wondered if the vagus nerve itself is damaged somehow. No idea how to figure that out or what to do about it.

The fatigue is debilitating. I have tried to push myself physically by going on long walks, doing yoga, doing push ups or other exercises, it doesn't matter. I am still on most days so weak that to walk to the top of the hill to get the mail is difficult and disorienting. My Dr. says that its basically like I am walking around with giant foam shoes and thick goggles on, my brain has lost connection to my body and the world around me. How am I supposed to adjust to this?

As if all of that wasn't bad enough, last year I tried doing vestibular exercises and I pushed myself too hard. I wanted to be better and instead I made myself so much worse. Now as a result I have an incredible ringing in my ears (I had it before but not as bad) and an extreme sensitivity to sound. The ONE thing that I had to keep my mind off of this nightmare was my guitar; now I can't even play my acoustic anymore because the sound is like a drill in my brain. Even the sound of people's voices can set me off. Again, how am I supposed to adjust to that? Its been that way for the last 8 months.

I'm sorry if I seem so negative but I am at the breaking point. I'm 28 years old and my life is worse than my 70 year old neighbor's. There were so many things that I wanted to do with my life, and now I can barely watch TV. What is the point of living like this?