Monday, August 16, 2010

I'm what you call a "special case"

So I'm not your typical MS patient. I'm young, a male, and I'm not in a wheelchair. When I was first diagnosed , about 7 years ago, statistics showed for every male diagnosed there are 2 female diagnosed with MS. Now the ratio of women to men is something like 3 or 4 to one. Another statistic is middle aged people are more commonly diagnosed than younger people. So a guy diagnosed at 19 is as rare as a leprechaun riding a unicorn.

I don't currently use a wheelchair or cane, but sometimes when I have a relapse I might have to use them. I have whats called relapsing/remitting multiple sclerosis. That means occasionally I will have an attack and have certain symptoms, and after time passes or I take steroids they go away most of the time. I have symptoms that come and go, and some stay. Everyday I wake up is different. Some days I'm in pain, some days my balance isn't great, and sometimes I'm disoriented or dizzy. It's like I wake up and have Pat Sajak spin the wheel of misfortune, and Vanna White turns letters to show how I'll be feeling that day. Most of the time I just have little problems that are just tedious and annoying, and some times I feel great.

Most of my symptoms are invisible. My most common every day symptoms are fatigue and cognitive impairments. What are cognitive impairments? Anything that has to do with forgetfulness, concentration difficulty,  confusion, disorientation, disorganization, and indecision. I experience most if not all of those every day. People get mad at me when I forget certain details, or if I repeat myself, or if I don't pay attention when they are talking. I get so down because I can't help it and they don't understand.

As far as fatigue goes, it depends on a number of factors. I randomly just feel that way sometimes, even if I haven't done anything labor intensive or had a good night's sleep. I told my friend I was tired that day and he asked what I did that day, and I said "Absolutely nothing". Heat also makes me fatigued. Normally I just stay at home but if I have to do things in the heat I have to wear a cooling vest. Stress also makes me fatigued.

I have one of those handicap parking placards and I only use it if I'm relapsing, most of the time I get the far parking spot because I like to walk. But when I have to use it, I hate it. Not because of shame, but the way I look. Before I was diagnosed, if I saw some younger guy park in handicap parking that didn't seem to have anything wrong and wasn't picking up a handicap person I would have been disgusted. Since having this disease I learned that you can't judge a book by its cover.


  1. sounds a lot like me , 9 years now ... may i ask your age ?

    i am 53 years old, female .. first MRI showed a very old lesion .. 44 years old and , wham, dx'd in 6 mths. ...

    but i also am "odd" case .. i refuse to stop .. even though i do have a disabled rating and do have "pain" issues , my rheumo and i have worked out a regimen , for now ..

    my neuro's say , eh not bad .. even though i am a slow relapse/remit .. so i fall off the critical case list .. lol .. but have all the symptoms as one who is in a chair .. cept i choose to excersize .. eat right .. REST and do my brain excersizes as well ..

    thanks for the post .. found you on FB , NMSS page .. good luck and keep up the great spirit .. never give up / never give in ...

  2. I have MS also and brain exercises are the best. Some days you think your great and others you need to think a little harder but it is an excellent idea for people with MS