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Numbness and tingling of the face, body or extremities (arms and legs) is often the first symptom experienced by those eventually diagnosed with the disease Multiple Sclerosis. Personally, I’ve had a lot of numb feelings in my 27 year MS career. When I was considered to have Relapsing Remitting Multiple Sclerosis (RRMS) exacerbations or spells always brought numbness and tingling somewhere on my body. My spells would come every 12-24 months. The first symptom would generally be numbness somewhere. Sometimes it was just a 3 x 4 square inch on one of my thighs. It would signal though that a spell was on the way.
I remember my first exacerbation after my diagnosis. I experienced complete numbness in my left arm from the shoulder to my fingertips. I didn’t have a neurologist yet that I liked so I had a numb arm and hand for about three months. I learned later that steroids could have ended it in three days. After the numbness went away normal feeling came back to my arm however I only got half of the feeling back in my left hand. I still don’t have all the feeling in my left hand as of May 2018.
Another time I went with friends to Chippewa Falls, WI for a weekend of country western concerts. We got there on Friday morning and the beer started flowing. We partied, danced, ate and mingled until nighttime came. We went to bed and it started all over again on Saturday. It was hot and humid on Saturday and we had another great day. About 11pm we went to bed. I was sleeping in a camper with another guy. Suddenly, the right side of my face became numb!
It was weird because I’d never had numbness in my face before. It was just half of my face, too. It was like there was a line drawn right down the middle of my face. The left side of my face had normal feeling and the right was numb! I remember falling asleep at about 1am hoping it would go away. Before that though my mind was whirring as usual. How long was this numbness going to last? Is it going to go somewhere else on my body? Am I getting an exacerbation? Did I party too hard or not get enough sleep the previous two days? A person’s mind can do crazy things to itself. Luckily, when I woke up on Sunday the numbness had completely disappeared! I remember that was the only time my face ever got numb from my MS. I also didn’t get an exacerbation!
In May of 2018 my neurologist said I could now consider myself to have Primary Progressive Multiple Sclerosis (PPMS). As far as I can tell the only good things about my PPMS are that I don’t have exacerbations anymore, I don’t have numbness and tingling anymore except in my feet and I don’t get optic neuritis anymore! I said above that I don’t get numbness anymore. However, my feet and toes have been in a constant state of numbness for the past 15 years.