How long since cis turned to ms?

Just wondering how long it took from a first ms like attack that wasn’t diagnosed as ms to then go into get a diagnosis?

Hi Anon,

There is no answer to this one. Not everyone with CIS ever goes on to have a second attack, so the answer might be: “never”.

In people who do have subsequent attacks, and thus go on to be diagnosed with MS, the second attack can be years later, or just weeks. This is true, too, even once people have been diagnosed. There is no answer to the question: “How long until my next relapse?” It might be tomorrow, or you might not have any more.

Knowing the timescale for other people will not help predict what will happen to you. It’s like knowing the statistical frequency of earthquakes still does not let us forecast when or even if a particular area is going to have one.

I’m sorry if this sounds an unhelpful reply. It’s not meant to be. It’s just that comparing yourself with others is useless when it comes to predicting the future for you personally.

Your best bet is to live life as best you can, and try not to let it be blighted by something that may never happen. I’m sure you don’t lose sleep worrying if you will be one of the one in three to get cancer, for example. That too is a real possibility, but at the same time, might never happen. I’m sure you don’t waste today worrying about the “what ifs” of that, do you?

Tina

Tina has given really good advice. For my first major attack happened end of June my CIS became ms in November but everyone is different. Don’t worry about what ifs. I did and I realise now it was a waste x Good luck

When I had my first attack the neurologist told me to go away and put it out of my mind. I was told that IF I had another attack it could be in 6 months, a year, 2 years or maybe never. Even a neurologist cannot predict the timescale, just as Tina has said.

Live your life to the full and what will be, will be

Tracey x

My onset was late in August 2007, and a (private) neurologist gave me a Dx of Transverse Inflammatory Myelitis (TIM). He then referred me to himself at the NHS hospital where he worked, and my formal DX of MS was in December 2008.

Between the onset, and the formal Dx, I had been to Prague, San Francisco, Seattle, Las Vegas, and Orlando (some conferences and some pleasure). My first relapse (mid 2009) had me on IV Steroids, and stopped me going to a conference in Washington DC. I finally retired in August 2009.

You have seen the advice above. Mine is: “Do what you can, while you still can”. You really do not know what life is going to throw at you, so don’t wait for it to happen.

Geoff

Hi cannon,

All good advice above and all I can do is say what other people have said. Live your life, we only get the one. My first CIS was in 1994, i was eventually diagnosed in Sep 2012. I am very lucky I know but I can live with my ms it doesn’t and has never really affected my life. No one, other than my wife knows I have ms and that is after 20 years.

What’s your tips gorrest fump? Glad your doing so well. Thank you.

Hi anon,

Everyone’s ms is different, I realise I am very lucky that for a long time it hasn’t affected me much. In 1994 I woke one day to discover I had no feeling in my leg, it worked fine but I could stick a pin in it and feel nothing. Had an MRI and they said they found nothing. I had only been back to my go twice with ms like symptoms and was sent on my way both times. So I just tried to forget about it and get on with my life. The I started running and joined an athletics club. I suppose I was trying to find out if things would stop working, but they didn’t, I just got fitter and fitter. Best 10k was 41 1/2 minutes. I still do a little running and go to the gym but I have noticed or a least I feel something different in my legs and the way I walk. Is it I am getting old, is it the ms, or could it be it is because I have now been diagnosed with ms, I don’t know.