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16 years ago....

16 years ago I went back to work on the 4th Jan, having being diagnosed with ms just before Xmas and having taken iv steroids between Xmas and new year, having said I went back to work, I meant after the Xmas break, I hadn’t actually been off sick. Then I began a battle to get the newly licensed betaferon which I have taken since March 1996 and still take. This day 16 years ago, after my steroids, I walked not too badly, today I really struggle to walk. Other than that I have done ok I suppose. So, whats the point of this post, none really but maybe it will encourage those newly diagnosed and also perhaps someone starting on dmd’s. Cheryl:)

Good to hear you are doing OK, Cheryl. It was 12 years for me last November. Like you, I’m not as well as I was. However, if, 12 years ago, I had been told that I would be as well in January 2012 as I am, I would have been very glad to hear it!

Alison

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nice one Cheryl, sometimes wonder about how it may change but also know that it is always going to be different for everyone. Have a good day folks

Willie

Hi Cheryl,

16 years is a long time! I find that both sad (for you), and somewhat encouraging.

It’s now two years since I had the first episode I really couldn’t ignore, which led to my diagnosis.

With hindsight, I had been feeling vaguely unwell, and had suffered minor episodes (relapses) for some years before that, but had somehow managed to kid myself it was normal.

I thought I had an “attitude problem”, but not that I was ill. Quite sad, looking back, that I didn’t understand the mounting evidence, and kept thinking I just wasn’t trying hard enough.

Knowing the real reason has been better and worse. When I thought it was my own fault for not trying, there was always the hope I might someday be able to turn over a new leaf. People do!

But when I learnt I had chronic illness, and that it wasn’t simply a matter of trying or not trying, that hope went out the window. I realised I was always going to find everything more of a struggle.

Tina

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thanks for that cheryle its really nice to hear good news for a change i was diagnosed a year christmas just gone , i beleive that i am not much worse than i was and have taken dmds had to change them because they didnt like me and am now being told the painkillers may be have to be changed again causing problems maybe more than ms always try to look on the bright side and live for today not tommorow xx

thanks again

sami xx

Thanks folks, it’s good to hear everyone’s stories. I had actually had eye problems in 1989 and then many "attacks"so guess if we add in the 6 years from 1989 until diagnosis, that makes 22 years now. Anyway I guess if you had told me 16 (or 22) years ago how I would be today, guess I would have taken it. Cheryl:)

Although I have only just been diagnosed, my symptoms started more than 5 years ago, so I guess that’s how long I’ve had the MonSter. Symptoms have deteriorated considerably in that time (I have PPMS) I hope that the deterioration slows down a bit. I am seriously considering having a go with LDN to try to calm it down! Teresa xx

Hello there, it will be 26 years for me in May 2012, since the initial provisional diagnosis of MS- 15 + years of pretty much benign and then 10 or so secondary progressive. Still working nearly full time. I drive an adapted automatic now but can still walk a bit, especially with my stick. Not so good on going downstairs though.

I have been lucky I know. No medication. Just gabapentin for sensory pain. I was never offered DMDs. Not about 25 years ago, were they!

Now I am watching my diet and have recently started taking VitD …

good luck everyone

Gill