I'm 19 and I was diagnosed dec 29th when I was 18. I started a self injection for 6 months but it didn't work and I went from5 to over 50 lesions. I'm on tysabri now I find out next month if it is working. But I still feel I can't do everything I used to. I feel like no one in my area knows what I'm going through. Is anyone out there know what I'm going through??
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I think it's harder when you're as young as you are, because most of your peers are still in the time of life where you are highly social and doing something during every part of the day. There isn't a lot of 'downtime' where you could grab your rest. On top of that, very few have chronic ailments, so there isn't a lot of understanding on how to adjust for that.
Are you in a large enough area that it would have a chronic illness/chronic pain or an MS group? I attend a chronic pain one and while I understand it's different for all of us, we have one lady there who is about 22 years old and has extremely bad fibromyalgia. While she is the youngest and has unique challenges due to her age, she still at least gets some feeling of support and camaraderie, because at least we 'get' what it's like to live in pain daily and what a large chunk of our days we have to plan around our illnesses. -
Yes. I was 25 when it all started with me, and that was back in 1980 when so many tests and resources were not available. I was scared out of my mind in the beginning. After thirty-two years, I have this to say: First, there are many misconceptions about MS, one of them being the wheelchair stuff. Statistics are on your side--only 1 in 5 end up in a wheelchair and that's over the course of a lifetime. I'm sure with research and the DMAs going on, that number will be reduced. Second, stress aggravates MS symptoms--physicial, mental and emotional stress--and even something like your monthly menses or being hot will affect them. Right now, being newly diagnosed, you are under tremendous stress. Third, MS can be managed effectively. I know that from experience, and your greatest resource will be knowledge and support from another peer. Don't get hung up on the DMAs right now--I never took one!! If you think it's giving you more problems than benefits, then quit taking it. There's too much fuss made over the number of lesions one can have. You can always try something else later. Finally, check out my book "Managing MS: Straight Talk from a Thirty-One-Year Survivor". A review was done on it this summer in the MS World resources section and it will give you a lot of direction as a newly-diagnosed section. I am a peer with a ton of experience.Comment
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