dmt727 10/04/18
Last reply 3 months ago
Confused?????

Hi, me again! Well I finally had a private consultation with a Neuro last night and to say that I am left with more confusion is an understatement??? I have had an MRI which showed lesions and a LP which showed I have the band thingy’s, sorry not sure what there called?
I still have symptoms which started about August last year and have not really gone away but consultant said he couldn’t say for definite if I had MS? He said as I have only had 1 episode then it’s difficult to say? But it was highly likely that it was?
I now have to wait to see the NHS neuro in June.
Feeling really fed up with it all :((

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stumbler
3 months ago

@dmt727 , I can understand your frustration. The diagnosis of MS has very strict criteria, although there are recommendations to revise these.

However, at present, you don’t fit the “multiple” part of Multiple Sclerosis, having had just one episode. Your situation is sometime referred to as Clinically Isolated Syndrome (CIS).

CIS may progress to MS, or it may not. Just be aware that any new symptoms may indicate progression and should be reported.

There’s some details about CIS here :-

https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis


vixen
3 months ago

Hello @dmt727. I also ever had one initial onset in August 2016 and my symptoms have never gone away,although I recovered from the feeling dreadful/fatigued etc. I had an MRI and a LP which also showed band thingy’s and was give an RRMS diagnosisfollowing this initial onset attack.

Oddly enough, although my initial MRI and consultation was also private whilst waiting for the NHS referral, I was actually advised by the private neuro that I would be better-placed to proceed through NHS, not least because my hospital has a massive and work class Nero department. Since then, the NHS has provided a faultless service and I feel well supported. It’s just the initial phase, the waiting game would have taken so much longer with NHS which is such a pity, but what we all face.

June is only 2 months, so it’s not too bad. That gives you time to continue to focus on your recovery, keep a diary of symptoms, and keep on Shifting! X

So, it may be CIS with you, or may not even be MS.


caseyxo
3 months ago

@dmt727 I am in the same position.

Private Neuro diagnosed CIS, although suspects “mild” MS but is a conservative Neuro.

He has advised me to wait and proceed through the NHS. I am now nearly 9 weeks since I had my MRI and appointment with the NHS and due for an 8 week follow up of which I have not had or even notification for the appointment. If I remained waiting for the NHS for the last two months I would have still be wondering whether I had a viral infections, NMO or MS- each given a 30% chance by the NHS neuro but of course though private investigation I know more.

I feel your frustration I honestly do, all we can do is wait, hope and try to relax and stress makes my symptoms worse for sure.

@stumbler With a CIS diagnosis and no clear point of contact do you have an idea of who to contact with new symptoms? GP? I have new symptoms but perhaps not a relapse.

Thanks,

Kerry


maureena
3 months ago

I am also diagnosed cis with + lumbur puncture and lesions in brain and spine. Has been 3 years since episode of optic neuritis and leg weakness and although I believe I’ve had sensory relapses no changes in mri means no diagnosis of def ms. It can be a frustrating time but I guess we should be happy that no more major relapses is something to be happy about. I’m due another mri as I told Neuro I believed i had a relapse so he agreed on another mri. Just keep contacting nurse if any new symptoms arise it’s something I never done until recently but it gets it down on notes for Neuro to keep track of symptoms. Hope you keep well and as hard as it is try not to stress limboland is not a great place but prepare yourself for what could be a long wait. Maybe Neuros in UK will take note of changes to mcdonald criteria soon 🤞


vixen
3 months ago

Hello again to all above. Yes, I can’t reiterate enough how important it is to try to keep stress at bay during this tricky time. It’s really tough, but you have to remind yourself that whether you worry excessively, or whether you’re laid back and don’t give a monkey’s, it won’t affect what has gone on, and won’t influence the outcome. The best thing you can do is look after and even indulge yourself. Do what ever you need to do to support yourself; a shopping splurge, trip away, monster bar of chocolate. At least you’re in the hands of the professionals and there is activity around this, even if frustratingly slow. Wishing you positive throughts and cosmic hugs x


stumbler
3 months ago

@caseyxo , if you were told that you would have a review in 8 weeks and it is now 9 weeks, then you need to make sure you haven’t fallen through one of the many cracks in the NHS’ floorboards.

You could give the Patients Advice and Liaison Service (PALS) at you hospital a call and ask them to check into the situation. They’re usually very good.


caseyxo
3 months ago

Thank you @stumbler have contacted PALS and await to hear to back.

Hope we all get some clarity soon


dmt727
3 months ago

Thank you for all of your replies!
I hear what your saying, just was hoping for some clarity last night.
I know it’s better to be CIS than MS but still difficult to accept the uncertainty of it might progress or not.
I guess none of us know the path ahead so just have to enjoy every minute and try to stop worrying 😉

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