I was wondering if anyone knows someone who was diagnosed with MS as a child or teenager.
The reason I'm asking this is because I've had MS since I was 16 and I feel very alone. I'm a member of several support groups, but I have yet to meet someone who has had the same experience as me. Quite often I get frustrated when I think about how I spend a good portion of my teens in the hospital while my peers were out having fun. And then there's the prospect of 'will I ever have kids?'.
I'd very much like to find someone who is going through or has been through the same thing as me.
I wasn't hospitalized, but when I was 14 the docs diagnosed me with rheumatoid arthritis. At 20-something they said no, its fibromyalgia. At 30 they said MS. The fatigue, muscle pains, joint aches, etc, have been around since I was a teen. People don't understand that young doesn't equate to being 'up' for clubbing all night or whatever.
My mom compares me to other people my age and is always asking why I'm not out partying. She doesn't understand that THEY do not need 10 hours of sleep every night + naps just to be able to follow a conversation without dosing off.
My daughter was diagnosed with MS when she was 19. In that year she was completely paralyzed from the neck down and blind in both eyes. At the time she was engaged to her high school sweetheart, but her MS was too much for a young romance to survive.
I know that she has felt cheated at times, but she makes every effort to participate in 'normal' activities. A lot of times she pays for it later, but she says that you only live once and there's no guarantee that she'll be able to continue doing these things even a few years down the road.
It kills me sometimes. I get angry when her peers are taking their kids to the park for play dates and my daughter is in the hospital with her 4 year old sitting next to her reading a book. Life doesn't seem fair sometimes. I hate MS for how it affects my daughter and all of you who have to cope with it. I think my daughter has a better attitude about it than I do! LOL
I don't know anyone diagnosed as young as you, I'm 22 and was just recently diagnosed, but I totally understand how you feel about "will I ever have kids?" I'm single and always thought I would end up having kids eventually, now it's like, "what if..." A lot of the time I'm too tired to hang out with friends and party like I used to, but my friends are really supportive and still want to spend time with me even if it's just sitting around. Try to enjoy life for the now and not worry too much about the future. I have faith that everything will work out maybe not exactly the way I planned but nothing ever does, right? Hang in there!
I was dx'd last year and altho I am 35,I had to reply.I think I have done bout everything under the sun as a teenager,,but now that I am older and look back,I can see what a waste of time partying,hanging out with friends that now won't even wave at me.There is so much more to life,and there is no reason why you should'nt have children,in fact my kids give me a reason to get up everyday.You just take it day by day,,I hope things get better for you,