I'm Rob, welcome to our group. I read your story, and many of your symptoms are familiar to me. I was diagnosed with Systemic Lupus five years ago, and then Multiple Sclerosis one year ago. It's known as an overapping illness. People can have both. I have always been very sun sensitive, but when I was younger it wasn't really that odd as I have very fair skin and I'm of an Irish background. I would get a bit of sun, and have a bad reaction, like I had the flu in the summetime-I thought it was normal to be terribly ill after a mild sunburn.
When I was 34 I started having all sorts of problems-terrible fatigue, cognitive problems, joint pain, and rashes on my arms, chest, and legs. Long story short, after alot of BS I was diagnosed with Lupus. My life took a major turn, and I went on full disability.
Around two years ago I started having numbness on the right side of my body. Not total, but enough to cause that side to be "lazy". My right foot would drag. I suddenly found it very hard to read-when I would look at a page in a book, or a computer screen, as soon as I tried to read, my eyes would suddenly dart from left to right so quickly that it blurred everything. It would only last a second or two, but it happened everytime I tried to concentrate and read, and it still does to a certain extent. I also have electric shock type pain in my hands and feet.
I saw a Neurologist, had multiple tests done over a period of many months, got a second opinion, and was diagnosed by both neuro's with secondary progressive MS on top of the Lupus. I've never had anything like a seizure, nor have I ever had a stroke-my numbness comes from the Myelin around my nerves breaking down. Myelin, is like the insulation around an electrical wire. If it wears through or breaks down, the metal core of the wires touch causing a short circuit, that is basically what MS is. De-myelinization-the breakdown of the insulation covering the nerve pathways.
People can have central nervous system problems from both Lupus and MS. You could have one, both, or neither. These things can be terribly difficult to diagnose. I suggest you start writing down and keeping track of your symptoms, even the odd ones that don't happen all that much. See your neuro, see your regular Dr. as well as a rheumo and any other pertinent specialists. You may get good advice, and you may get dismissed as a hypochondriac. Hopefully you have health care professionals who will listen, and help. Above all, be persistent. There's no law against being a proactive pain in the butt patient. And keep doing what you are doing by coming here as well as other places to ask questions. You are learning what you can about what might be affecting your health, this is a good thing. An educated patient can be their own best advocate.
When you say you need answers, I totally understand. You are here because you know something is wrong, so I hope my information about what's possible isn't going to scare the heck out of you. You need answers. If you end up with one of these conditions, know that there are effective ways of managing these disorders, and it's by no means the end. People survive, even thrive despite these diseases-I'm one of them. I hope you can find the answers, and treatment that you need. Please, make yourself at home here, and ask any questions you need to.