This Is MS Multiple Sclerosis Knowledge & Support Community

Hello all,

I was diagnosed 2 years ago with MS. I am only 26 years old, and have a lot of my life ahead of me. Since being diagnosed I have jumped right into doing the things I love, and experiencing life in a way I have never lived before. It has opened me up to a different view on life that I would not have had if I was not diagnosed with MS.

I wanted to ask a few questions:

When it comes to being diagnosed with MS, what road blocks are you having with living a fulfilled life, if any?

What difficulties did you have with optimism after being diagnosed and how are you handling it now?

Look forward to hearing from everyone!

Dave

Difficulties after being diagnosed are too numerous, but mainly due to incorrect beliefs on the parts of doctors. I also can't walk, drive a car, or play guitar. I still use a walker, ride a recumbent tricycle, play flaky by-ear piano.

Difficulties with optimism are an occupational hazard. Riding my recumbent tricycle, or excercising in general, help. In winter I have more trouble because I don't get outside much. If I could live anywhere it would be San Francisco.

I have been more optimistic since my CCSVI procedure and also since starting 300mg biotin /day. Also since regaining some of my core strength (who says you can't rebuild muscles with MS after 60?) due mostly to sit-to-stand excercises. I can now enter and exit my recumbent tricycle by myself, if I don't cycle so far that I get too hot or over-tired.

For heat on the trike I wear 2 crystal-filled neck-coolers full of cold water, and a do-rag on my head soaked in water. The crystal beads hold water. I don't wear a helmet in spite of a bad accident where I was only alive because of the helmet. I get too hot. Heat makes you stupid.

Hi,

Roadblocks fall into three boxes; The ones you that come from your attitude, the ones that others thrust on you and the conditions the disease imposes.

The most important one is how you handle life. My own experience is that no one will really make the difference to you that you can make to yourself. Try to live life as normally as you can. Do not allow other people to pigeon-hole you. Tell people who need to know and never be embarrassed that you have MS but don't go screaming it from the rooftops. In particular don't make the topic a blanket that smothers everything else. Lots of people aren't aware that I have MS and are surprised when they find out. I deferred telling my children when they were young as I was concerned they would either blame themselves or worry that it could happen to them. When they eventually found out the only question was could it happen to them. When I said they were ok you could tell how relieved they were. I take that as evidence that it was the right approach for my household, yours might be different.
Other people are a real pain. They immediately start doing strange things such as grabbing things out of your hands and speaking in a different speech pattern yet two weeks later they are just as likely to completely ignore when you could use a hand.
Tell people on a needs basis. Its best if most people regard you as normal if you appear that way but never hide that you have it. I'm sure I am not the first person to feel that others zone out and change to a different channel if discussing MS becomes too much for them. It will impact on your work opportunities. Other (lesser) candidates will be picked ahead of you and you will feel like you have been left on the shelf. You can still get where you want to go but you need to shine.

I was sick when I was first diagnosed but as I had been left thinking for some days that I may have brain cancer I was naturally optimistic when I first found out. The thing I wish I had was someone like me to talk to. Instead I was fed an endless stream of confused and illogical ideas. That's what makes this site worth a visit.
Keep living as normal a life as possible but watch things like diet, nutrition, infection and fitness. Ask questions of us but use a simple test when reading- does this describe me and does this work?
I'm nearly 58 and have been diagnosed for over 20 years. I think I have had symptoms since my teens. I have had three great kids, worked a hard job for 35 years, had hobbies and travelled. I wish I was 26 again so I am jealous of you.
Enjoy life.

Regards