A couple of weeks ago, I had a bout with my absolute favourite MS symptom– hypersensitive skin. This was a particularly bad bout and lasted for a few days. When I have that problem, even the feel of my hand touching my arm is too much. It feels like I have a terrible sunburn all over my body.
All of my symptoms started waaaay back in 2002. Like a great deal of MS patients, my early symptoms were annoying but didn’t seem like anything serious at all. In fact, the first symptom was just a funny black spot in my vision that would come and go fairly regularly. The next symptom was the burning pain. I ignored that, too. What finally sent me to the doctor was the dizzy spell from hell. Everything seemed to be moving back and forth rapidly with these jerky motions. Things were moving so quickly, in fact, that I got nauseous. I couldn’t stand upright– my balance was gone. I couldn’t even walk straight. I literally crawled to my bedroom and lay down. Even lying flat on my bed with my eyes closed, I could still feel that spinning sensation. The only thing that stopped it was my falling asleep.
Being diagnosed with MS is a grueling process, especially since, in the early stages, the neurological tests often look fine. Lesions in the brain and spine build up after a few flares, so early symptoms don’t always cause visual damage. I was told it was psychological, of course. Then it became fibromyalgia, even though pressure on those points tended to make my joints feel *better* most of the time. In fact, it was everything from major depression to food allergies until it was actually diagnosed.
After my diagnosis, my first reaction was relief. My symptoms had a definite name. Then, after the immediate shock wore off, I was terrified. My conception of MS was the person in the wheelchair who could barely function. I’d never heard the stories of MS patients who had joined basketball teams, participated in fundraising marathons, and just kept going with their lives. Yes, relapsing/remitting MS causes problems. It just doesn’t have to stop you from living an active, meaningful life.
But back to my original point…pain syndromes. As it turns out, the pain I experience most frequently is called allodynia. It’s a pain response to a stimulus that isn’t usually painful. If someone holds your hand over a fire, it burns (funny, that). With allodynia, though, no fire is needed. If someone holds your hand, it burns. I’m feeling that pain today. Always fun. I was actually in a drug trial for a med that was working really well, but now that the trial has ended, I have yet to get back on a set drug regimen specifically for MS. The antiseizure drug for bipolar disorder helps a bit. The pain is, after all, neurological in origin. I finished the last bit of testing required last week and am now waiting for the Meeting of the Neuros for an MS treatment plan. Should be interesting.