Confused after appointment

Hi everyone,

For my full story, please read my previous posts! But in short, I am currently having a second episode of symptoms following my first episode of double vision in 2014. This is including a relapse of the double vision and a new symptom - pins and needles/numbness all down my left side.

I had an appointment with my MS nurse yesterday (I mistakenly thought I was seeing the consultant, I knew it was too good to be true getting an appointment 10 days after referral!). I left the appointment more confused than ever! The MS nurse implied that I already have a diagnosis of MS following my first episode of double vision. I said that I was under the impression, and had been lead to believe by the consultant and a different MS nurse, that the first episode was classed as CIS as I didn’t meet the criteria for a full diagnosis. She read the clinic letter from my previous neuro appointment and said it was a bit vague but essentially said the consultant believed that episode was a first episode of MS with a high chance of relapse (which I guess is what CIS is anyway!!).

So, I’m now very confused as to whether I have a diagnosis or not but I guess it doesn’t make much of a difference since I’m now having a second relapse and so I think a diagnosis is inevitable! Just trying to get my head around this crazy world!

I feel fairly okay about the diagnosis (I’ve had 5 years coming to terms with the possibility!) but obviously anxious about the future! And I’m getting married next week so desperately praying that the symptoms of this relapse clear up soon as I’d like to only see one of my future husband when I’m walking down the aisle!

For now, I have an 8 week wait for an MRI and a 5 month wait to see the consultant - oh the joys!!

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That appointment must have really turned you upside down. To have been living with a ‘CIS, might turn into MS, just go and get on with life’ diagnosis turned all of a sudden into ‘MS from 5 years ago’ is odd. To say the least.

But, it sounds like you’ve actually been better off not diagnosed, and not on drugs that can give you side effects during the last 5 years. You’ve managed to get qualified (in fact heading for promotion) and getting ready for marriage without the constant presence of MS to worry you.

Obviously your previous attack - CIS - was probably always somewhere in your head, but as for getting on with life, you’ve certainly done that.

When I had my first MS attack / relapse, and was first tested (22 years ago, all results positive for MS, MRI, LP and VEP), I was told, ‘you don’t have MS’. In those days there was no diagnosis of CIS, else I might have been given that diagnosis. There also weren’t any DMDs, even for confirmed MS. So I was no worse off. In fact I was far better off for not being diagnosed. I went off, got on with life, took far more risky work decisions than I probably would have done had I been told I had MS.

In fact I did have relapses in between that first time and my eventual diagnosis 5 years later. I had optic neurosis twice, I had periods of numbness and pins & needles. I fell many times, quite spectacularly at times and had horrible spasms that I didn’t know were spasms. I just lived with it. There also was no internet, so no googling of symptoms.

In retrospect I’m glad I wasn’t diagnosed for the first 5 years. Irrespective of the relapses I had (bearing in mind there was no avoiding them anyway). I might have had safer, more predictable employment and not taken the job on the other side of the country that paid me a lot more money. I probably wouldn’t have taken the risks personally or with my work that I did. Chances are I wouldn’t have met my husband when I did. Once I was actually diagnosed - following a more severe relapse - the first 4 DMDs were made available that same year. So avoiding relapses was possible for a few years.

I hope your ON goes away in time for you to see just one new husband at your wedding. And that you find you can live without regrets over the last 5 years with no diagnosis.

Best of luck, enjoy the wedding, and your new life. Go for the promotion which you’ve worked hard for. Soon maybe you’ll get a full diagnosis and subsequently hopefully a disease modifying drug so can continue relapse free after this one remits, for many more years.