Clinically isolated syndrome-underlining m.s

Anyone only had a clinically isolated syndrome?. In 2010 6 months after my son was born I suffered from severe vomiting and after a few weeks my vision went. After being admitted to hospital were I had two MRI scans, lumbar function test, blood tests etc 4 months passed and I was told it was prob m.s then I was given steroids and I recovered quite quickly. Since then I have a lot of the symptoms that you all talk about the walking to the left, blurred vision, memory and concentration problems, nightmare fatigue etc. in hindsight I may or may not of had m.s for years as from about the age of 18 I have had bouts of illnesses which I ended up in hospital for but never got diagnosed with anything…I almost felt that the medical professional thought I was making things up!. I know I’m lucky that my symptoms are not severe but still feel in this limbo land where I don’t feel I can go back to my profession as I don’t have the stamina / want the stress or the travelling and I know I live and plan only on a daily basis but I miss my old unpredictable life. Anyone going through the same would be good to hear?

Hi,

Most of us would have had Clinically Isolated Syndrome at one time, even if it wasn’t called that… It just means the first presentation of neurological symptoms that are suggestive of MS and have MRI evidence to support it.

MS can’t be diagnosed until there is evidence of Multiple relapses, so a diagnosis of CIS is often made until either more lesions become apparent on MRI or until you have another clinical relapse; that is symptoms that also show objective signs of new neurological activity.

Were you offered any Disease Modifying Drugs, such as Betaferon, Copaxone, Rebif or Avonex? In Australia we seem to be much more aggressive about treating CIS with the DMDs than your Drs are in the UK. But it has been shown to slow down the conversion of CIS to clinaclly proven MS significantly and insome cases to prevent the MS from developing at all. It might be worth asking your neuro about starting treatment…

Being unwell with a newly diagnosed neurological condition is hard indeed. But don’t give up on your old life just yet. If your are in a relpase at present, give yourself time to recover. Most people make extremely good recoveries from relapses in these initial stages of MS and even for years afyer the disease has become more established and there is nothing to suggest that you won’t be back to normal functioning fairly soon. You won’t always feel this rubbish.

B

I was too a CIS’er. I know the feeling when you telling them your symptoms and you feel that you have made them up. But i was lucky to get a great neuro (he was in the last mssociety mag getting an award), he put me straight into hospital to get the steroids. He went through the last few years of my life to see if i was getting ms “attacks” . Then a bout of sight probs and more tests he was happy it was ms. It only took 6 months, but its such a hard thing to prove you have. They dont want to miss anything out. I feel the same I want to go back to my job but cant handle the manual labour at the mo. It is hard to adjust. But the way we feel today may not be forever, their is no timeline on recovery.

Thanks for your replies. I think I find it frustrating at times especially when I want my little boy to have the same up bringing as me…very active etc. my m.s nurse was unsure if I had a relapse a few moths back as I had new symptoms but no suggestion of another MRI scan. My neurologist has been brilliant and as It was a long dawn out episode (his words) it lasted from the end of jan to the April wen I was finally given steroids to speed up the recovery he said it probably was m.s but as u said unless you have a clearly defined ‘relapse’ It cannot be diagnosed although if I was to apply for a Job I would have to state that I have m.s! I think it’s the unknown that scares me most especially as. I Have no family support where I live currently and I do see I have progressed enormously since my episode as I couldn’t remember lots of things, I couldn’t drive, numbness and my hearing and eyesight was a problem it’s been a very slow process. I have tried to do some self employed work but the stress then brings on symptoms ad I have to prioritise my sons (he’s 3yrs old ) well being. I know it cud be worse and I am lucky in many ways but that doesn’t stop me being scared and worried about my future especially for my little boy. Looking back I think I’ve prob had a relapse every 3 yrs but it was only because I could not keep any fluids down the hospital had to do tests and lots of them there were!. Thanks again