New diagnosis scared

New diagnosis and before diagnosis
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F21
Hi!
I’ve just made an account after finding this forum, as I could really do with some support. I’ve been recovering from inflammatory demyelination in the medulla with unmatched oligoclonal bands and I’ve been given the diagnosis of CIS.
I’ve been told that any more inflammation will lead to an MS diagnosis, and I’m meeting the MS team every 5 weeks, as well as having MRI scans every 6 months. Even though CIS doesn’t always lead to MS, my consultant sounded pretty certain that this would be the case, and they’re just waiting for another inflammation before officially diagnosing me.

I don’t know how to feel at all. It’s been about 10 weeks since my initial symptoms started, and 7/8 weeks since I left the hospital, and even though I feel better, I still struggle to walk, I have diplopia and double vision from about 30 cm away, and I feel like I’m in constant pain and fatigue. I don’t feel like I’m ever going to be better again.
I suffer from mental health anyway, but recently I just feel so helpless and scared. Anytime I get a mild symptom (even if it’s just a cold) I can’t sleep or eat in worry that it’s a relapse.
I’m terrified, I’m supposed to be starting a new University course to train to be a teacher in September, but I don’t think I am going to be well enough if my condition does not improve, but then I’m equally worried that if I don’t study I won’t have any income (from student loans and bursaries) and if I can’t study, I definitely won’t be able to work.

I just need some advice, how do I continue knowing that at any minute I could relapse, and how do you decide whether to put health or career first. If I knew that I would get better in a month or two I could stick through it, but what if I never get better? What if I continue to feel this awful forever?
I’m sorry for rambling, I’m just really scared. I go through the ups and downs of feeling okay and then crying in bed. I just don’t know how to accept this diagnosis and move forward. Any advice would be greatly appreciated and even if you have just read this thank you for your time.

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Hi F21,

I just wanted to say I’ve read your post and I really feel for you. I’m currently awaiting an appt with a neurologist and am not diagnosed, so unfortunately I have no experience to be able to advise you, except to say that try and take heart from the diagnosis of it potentially being an isolated incident. It’s good that you are going to be so well observed with 5 weekly reviews. Just do what you need to in terms of resting and diet etc to aid your recovery. I hope that you start to feel better soon.

For now just take things one day at a time.

I wish you well

Winnie

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Thank you for your reply,
I hope your appt goes well with the neurologist, fingers crossed for you! It’s just nice to know that other people are going through something similar. I’m just taking it day by day at the minute, not worrying about what I’m doing or eating in particular, just giving my body what it needs or wants.
It’s really scary and I’m feeling pretty lost, but your reply has definitely made me feel less alone, so thank you very much.

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Glad to hear that. Keep talking. I definitely understand that fear of the unknown. I guess everyone on here does. You will find support on this forum. take care. x

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Hi friedpotato,

It has been about 30 years from my diagnosis, but I can clearly remember the terror I felt, so I really do understand. One of the many things I have learned over the years is to concentrate on the here and now. I.E what do I know? How do I feel? What are we doing about it?
Speculating about all the multitudes of “what ifs?” is normal but not that useful. It sounds like your medical team have caught on early in any journey which is brilliant, so that with any confirmed diagnosis they can talk to you about any proposed medication. Not wanting to sound like the old duffer I am but in the early days for me it was Steroids and wait. My suggestion to you would be to look after yourself with diet and exercise, listen to and learn from your body what works and what does not work for you. And enjoy your life to the max, whatever that might be. I will shut up and let you crack on. All the best
Mick

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Hello

CIS is honestly the most annoying non-diagnosis (IMO). It gets you literally nowhere except on a precipice waiting to either fall or just teeter on the edge for who knows how long.

One of the irritating things is that there are a couple of disease modifying drugs which are licensed for CIS: Avonex, Extavia and Rebif (see MS Decisions aid | MS Trust for the decision aid). They are all interferon betas, which aren’t the best at preventing relapses (about 30%ish), but they are better than nothing.

The fear and worry you’re living with isn’t going to disappear regardless of your diagnosis. If you are diagnosed with MS, you’ll still have the same fears about relapses. If you’re left in ‘limbo’, the worries will remain.

I suppose what I’m saying is that you are going to have to live with fear. Those of us diagnosed with relapsing remitting MS do. A relapse can come at any time. You manage to put that worry out of your head and just carry on with life.

I started my MS journey in 1997 at which point I was initially told ‘it’s not MS’ (falsely and I think the neurologist knew that). If they’d had the option then, it might have been called CIS. At that time there was no simple way to look for answers, so I just learned to live with relapses and put the fear to the back of my mind. I sort of wondered why I’d fall over my feet at times, or why I was seeing double or having spasms in my legs, but I think I’ve always had a Scarlet O Hara attitude - ‘I’ll think about it tomorrow’!

At that time it would have done me no good in any case to be diagnosed with RRMS or CIS. There were no licensed DMDs until 2002 when I was formally diagnosed following a bigger relapse than those I’d just been living with in ignorance.

What I’d expect to happen to you in the short to medium term is that the symptoms of your initial episode will continue to improve. This is the usual pattern of relapses. You feel as though the symptoms will never go away, but slowly they will. One day you’ll wake up and suddenly realise your pain or double vision (for example) have improved or even vanished.

Try not to put your life on hold, ‘just in case’. It’s possible that you will have further relapses and that you’ll ultimately be diagnosed with MS. Your university should be able to support you whether you have further relapses and are diagnosed, or even if you don’t relapse further but find the symptoms you still have remain.

Meanwhile, you could ask the MS team if it’s possible for you to start a DMD to attempt to avoid further relapses.

Best of luck

Sue

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Don’t they prescribe DMDs for CIS? I thought they did. I mean they are beginning to prescribe tecfidera for radiologically isolated syndrome… Perhaps you should ask to go on a DMD as it can help prevent future episodes. As for your university education, disclose to your university your condition and they will be understanding and helpful - they need to have protocols in place under disability laws. See what special accomodations they provide. On the other hand, if you are not feeling well and would rather defer for a year, talk to them again. Good luck!