Hi Bio,
A month before I was diagnosed, I was admitted into the hospital for neurological testing. I was starting to have vision problems. I would have severe eye pain, followed by blurred or tunnel vision. Sometimes I would completely lose my vision. I had horrible pain in my spine, and I kept getting awful electrical shocks predominantly on my left side. Then I went completely numb with an odd tingling sensation. I started having trouble lifting my left side all together. While in the hospital I was told they were looking for lesions on my brain and or spine. After 4 days of testing I was sent home without a diagnosis. I had been having symptoms of RSD for years, but had never heard of it. A month later I was diagnosed by my new GP (GP!!) with Full body RSD. She sent me to a Neurologist that confirmed the diagnosis. The neurologist started trying to treat my pseudo seizures (as he called them) and the pain with no success with either. He sent me to a PM Dr that was affiliated with the hospital I had been in just a few months before. The PM Dr. gave me less than 5 minutes and said he would not touch me with a 10 foot pole because it was in my brain. He said I would do best to make an appointment with his associate. I was checking out, and told the girl I was supposed to make an appointment with his associate. I asked what kind of Dr. He was, and I was told a psychiatrist. I was crushed, because for years I had been referred to a psychiatrist by Doctors that could not come up with a diagnosis. Each time I would go to a psychiatrist, then get evaluated, and then told this was definitely a physical problem. Not psychological, but once I had a diagnosis they could help me learn to cope with it. I went back to my Neurologist. He had a report from the PM Dr, and said, "we are going to keep looking for a PM Dr." When I asked my neurologist about the comment about it being in my brain, my neuro said, "he thinks it's all in your head, and it isn't." I was then referred to another PM Doctor who had never received any of my records, but confirmed RSD, and told me to come back for a nerve block. I knew just from reading that nerve blocks in one area didn't do any good if a person had full body RSD. I gave up on finding a PM specialists. I continued going to my neurologist (who I didn't have much confidence in) because I had exhausted all of my possibilities (so I thought.) My pain was not touched by the meds I was being given, my "seizures" were not under control at all, my eye pain had increased big time, my eyes would swell and get huge, and my memory was getting worse and worse. Then in August I heard of an excellent GP that practiced a mile from my house. I needed one closer than mine that was 45 minutes away. I went to her, and I was extremely impressed. I told her how I felt like I was only going down hill. She asked me if I would be willing to go to just one more Dr. who was in her words the absolute best Neurologist/PM Dr she had ever worked with. I had all my records transferred to this new Dr. My appt day came, and after 5 seconds of talking with him I was blown away. He explained how my RSD had spread. He told me that just based on my memory symptoms, my eye complaints, and my "pseudo seizures" alone he could tell me, before looking at my record that it had spread into my brain. Apparently the PM Dr who told me to go to the psychiatrist HAD INDEED seen damage done to my brain stem from the hospital test results over a year earlier! The new Neurologist said, "when you began having what your Neurologist called pseudo seizures that should have been a huge red flag that the RSD was leaving your central nervous system, and moving on to your brain. Your old Dr. could have done several things to stop the progression then. It could have been contained. As for your eyes, just by looking at you I could tell they have been affected." My eyes stay swollen, red, and puffy. They hurt all the time. By the end of my appointment he wanted to talk with me about prognosis, but I didn't want to go there. He said, "we have a lot to talk about at your next appointment....... I'm so sorry....". I was in shock. That was a book of an answer Bio, and now I'm not even sure if I answered your question!

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