The Internet for multiple sclerosis

The Internet for multiple sclerosis

I was 27 years old when I was diagnosed with multiple sclerosis. At that time MS had 2 therapy drugs available Avonex and Betaseron. The information on MS wasn’t what it is today because the Internet wasn’t what it is today. I can’t remember how but I joined a support group for multiple sclerosis. I’d say 3/4 of the group were in wheelchairs. At the age of 27, who had recovered 95% from her first attack, this was NOT what I wanted to see. I never went back. I started working in the nursing homes at the age of 30. Most of the residents had serious illness and a few had multiple sclerosis. They were in bad shape physically. I couldn’t answer how they were mentally because I would avoid talking to them at all costs. I didn’t want to face my future, my fears, my possibilities so instead I ignored them.  My doctor would many times ask me “what are you afraid of?” It was the vision of Richard Pryor not being able to hold his head up or those people in wheelchairs that use to haunt my vision.

I must admit there was a very long period of time where I did nothing. I took my prescribed medicine but nothing else.  I didn’t stay up to date on research. I didn’t watch my diet. I dealt with each MS exacerbation as it came, usually with tears, but I usually recovered 95% from each of them.  What I failed to realize that 2 times a year I was having theses exacerbation and each time I was recovering “mostly” but some disability, on some level, was always not recovering. Eventually these disabilities started adding up. Eventually I started having to pay attention.

Understand it took be almost 12 years to get to this point. First I started with research and what was coming down the pike. I had enough of shots and an oral drug was coming so I got pretty phyched about that. I was a member of an online support group which I still navigate and look for answers to this day. . They have a message board with patient to patient information on drugs, experience and symptoms and everything else you can think of. After my last really bad attack, I needed both mental and physical support and I turned to a psychiatrist but also to the National Multiple Sclerosis Society. . I needed a portable motorized wheelchair and I needed financial assistance. Another great site for information, resources and even grants. Finally when things hit the wall for me and got more and more difficult, I stopped working. I didn’t want to be sitting at home each day waiting for multiple sclerosis to take over, I wanted to met people like me. I found the Multiple Sclerosis Foundation. Here I found my MS support group in my area, MS activities, MS news and even again grant information.

Now I go to the MS meetings. I’m more up to date on research and new things coming in the MS world. I even changed my diet. I don’t know if I payed more attention in the beginning if I’d be better off today but doesn’t it matter? I wasn’t and the past is done can’t change it now. I can change the future. The Internet has made learning, communicating, talking and researching multiple sclerosis so easy. News is a click away. It’s amazing how much that has changed since my diagnosis. There is help for any questions in a quick search. I hope you utilize the websites for any MS questions you have. If you are like me frightened by the disease you can face it through your computer screen. One thing I’ve learned, knowledge is power. By the way, I’m not permanently in a wheelchair yet 19 years later and I hold my head up without a pillow for assistance. So my fears weren’t necessarily realistic.

8 thoughts on “The Internet for multiple sclerosis

  1. I totally understand what you’re saying. I was diagnosed at age 60, with a lot of misdiagnoses along the way. I immersed myself in as much knowledge as I could find. But it was more fearful instead of less fearful. That’s why I wrote my book. I needed to go through the process in my own head. And I hope you can bless others as it blessed me.

    1. I’ve loved your comments thank you so much. I always say if i can help at least one person that’s all i need❤️❤️❤️

  2. I had a similar experience. Diagnosed at 20 and on Avonex at 22. 10 years and various epsidoes later, I’m so thankful to be able to swallow a tablet instead of shoving a needle in myself every week! I’ve never been able to cross that bridge though and physically meet with other sufferers. My partner works at a MS Therapy centre and I will wait for her outside as I can’t bring myself to go in. I’ve always kinda thought that I know what my future may hold I don’t need to be reminded of it. My way is not a good way of thinking lol and I’d imagine for a lot of people that kind of thinking could lead to a very isolated existence! I know where I can go to in the future if I need to but I’m just not there yet.

    1. I honestly believe you go there when you’re ready. I was behin my computer for 18 years. I came out when I stopped working. It’s still difficult to see the future but I’ve learned to be grateful for the stage I’m in. I’m still on my feet (sort of) 19 years later. It’s you’re illness there are no rules.

    2. I honestly believe you go there when you’re ready. I was behin my computer for 18 years. I came out when I stopped working. It’s still difficult to see the future but I’ve learned to be grateful for the stage I’m in. I’m still on my feet (sort of) 19 years later. It’s you’re illness there are no rules.

  3. IT’s so important to share what we know about MS and you’ve certainly shared some solid places to turn to for information. I was diagnosed in 1986 before any approved meds of the internet. I am glad that has changed so today I am a freelance writer and health advocate helping others on their MS journey.

    Best of luck and of course best of health to you, always~

    1. I love finding people like you. Thats been the unexpected reward of blogging. I’m excited to read your posts.

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