MS diagnosis

[Sohardtochoose]

I’ve been diagnosed with MS and I’m waiting for an appointment to see the MS specialist Neurological team.
I’m resisting the temptation to search on line but thought I’d ask here.

It’s a wide spectrum thing isn’t It? Some people have MS so severely that they are registered disabled and others, like me, have it so mildly that they didn’t know they had it? Is that correct?

for you. It's frightening to get a diagnosis like this, but you're right, it is a very wide spectrum.

FWIW, my close friend was diagnosed over 20 years ago, and she lives a very normal life.

How did they diagnose it if you didn’t even know you had it ?

Thanks BB
That’s what I’m thinking.

Dodie, I had an MRI scan on my spine (looking for the reason for an issue I am having) and the orthopaedic consultant obviously suspected MS as he arranged a brain scan too.
Then referred to neurologist who diagnosed MS.

I have an aunt who has lived with it for 45 yrs. You can't even tell she has it.

Thanks lljkk, that’s good to hear.

I don't want to scare you buy it's not as simple as "some get it worse than others and so far you're ok so you've landed lucky".. symptoms can come and go, gradually getting worse as you age. There are new treatments and research all the time. I believe GSK have just carried out some work on genes regarding MS.

Poor you, your head must be all over the place just now .
I think everyone is different. It’s good they have caught it before you have any symptoms as I believe the medications they give out can really help if you catch it early.

My uncle has MS and has progressively deteriorated over the years he was diagnosed in his 20’s but his mobility didn’t get bad until he was in his 60’s. He’s a medication refuser so could probably be doing better than he is now if he took what the Drs have prescribed for him.

My friends mum has MS and has months of being great, really mobile etc and months of being ill and needing a wheelchair. It’s like an ongoing cycle. She does a lot of exercises and I believe she has Physio a couple of times a month.

A family friend also has MS and she had a long period (2 years or so) of being ill and needing 2 sticks to walk but then has been ok and walking around without any help for about 5 years now. She does sometimes get a little shakey on her feet if out walking for a long time. She says she thinks it’s the medication that has helped her improve so much.

Obviously my 3 examples are anecdotal.

Thanks for those last two posts (I think )
The consultant and the neurologist are both saying that certain historical occurrences are probably MS related/caused and so it would seem that although I’ve only just been diagnosed, it’s likely that I have had it for years (which I take as a good sign).

I think I need to stop thinking about it and wait patiently for my next appointment huh?

I'm sorry about your diagnosis, sounds like it's a manageable type.

What issues were you having with your spine?

Loveyoutothemoon, I tried to PM you to answer but it’s not available to your account.

I've just changed my settings, think I must have changed it when I had a weirdo message me. Do you want to try again?

Hello, I was diagnosed 19 years ago this year with relapsing remitting ms. Day to day I have sensory symptoms and fatigue but am largely well and my neurologist now describes my MS as "behaving benignly" I've never been prescribed any drugs for it and unless I tell people, no one would ever suspect that there's anything wrong. I firmly believe that ms is completely unique to each person who has it and I've had 19 years to get to know mine as a part of me. I suspect that I've had it for much longer than that without knowing. Acceptance of it as a part if you is key. If I can advise in any way, just let me know on here and I'll do my best.

DH has it. Diagnosed 3 years ago with relapsing remitting. He takes medication every day, sees a doctor every six months, but apart from that our lives are pretty much exactly the same as they always have been. We have a great social life, we travel the world, he has a great job that he loves.

His MS does affect some of our decisions. We brought forward TTC for example (I'm pregnant now, he's 29 and I'm 26), because we wanted him to have as much healthy time with our child as possible. When we bought our flat we only looked at ground floor properties, in case he has to use a wheelchair at any point.

I always say we did those things just because we weren't sure what the future could bring, but really, does anyone? I could be hit by a bus tomorrow and have to use a wheelchair for the rest of my life. We're just being super cautious.

He's very happy and we have a lovely life. People don't even know he has it until we tell them. The most awful part of all of it was probably the diagnosis 'journey' (nurse's word not mine!). PM me if you have any questions for him!

His last relapse was 2 years ago by the way - that means episode of pain, restricted mobility - and nothing since then, thanks to his medication.

sohard Dh was diagnosed 21 years ago and still leads a fab life, still working full time. Wait to see the neurologist, there are loads of amazing treatments out there now, you will be great stay positive.

Thank you all so much for your messages. And I really appreciate all you offers of help and support.

It is the fear of the unknown that’s getting to me at the moment I think.
I feel absolutely fine and I’m pleased to have the diagnosis as it explains a particular issue that I have had for years and years.

But it’s the fear of what ‘might’ happen in the future that I’m trying not to think about.
Hopefully I will get to see the MS neurologist really soon and I will then know slightly more although I’m beginning to understand that their forecast for me will probably be, at worst, fairly vague.

Thanks again all.

DH said that OP.l, about fear of the unknown. Then we realised that, actually, the future is always going to be unknown. Diagnosis wasn't the end of life as we knew it, it's just part of life.

Wishing you lots of luck and strength

You are a bit ahead of me, OP, I am waiting for my referral to neurologist, only seen GP so far. But its looking quite likely for me.

GP told me there was no treatment for MS that worked so I am quite cheered by people talking here about treatments.

Yes the uncertainty is very hard to deal with. I am a single parent / carer for my son so its pretty scary.

I have MS feel free to pm me x

It was a spine scan and (yet another) brain scan that eventually got me my diagnosis. I can't walk too well now but I'm not crumbling, I'm completely alive and kicking and my MS is stable. Don't panic 💐

Don't think too much about 'forecasts'. Think about disease modifying drugs. They make a big difference.

Well, there are no drugs that can 'cure' MS but there are various treatments that can slow down disease progression and treat the symptoms to make them less impactful. Talk to you neurologist about disease-modifying therapies. The sooner you get on them, the sooner they can start working for you.

Its not a simple case of a mild and a severe type of MS. Its a progressive condition.

How old are you OP, if you don't mind me asking?

I'm about 8 months ahead of you, diagnosed last year. I've started a DMD in the last few months.
It did feel massive for the first few months and I was upset. Now it's annoying as I have some damage that I'm aware of 24/7 but if the DMDs work I shouldn't get much worse.
My confidence took a knock and it's taken me a while to get back to doing everything I was doing 18 months ago. But I am a lot less stressed about it than I was!
Good luck :)

Even a simple course of prednisone or a muscle relaxant make a big difference in quality of life terms Tee and if OP is worried about progression then disease modifying drugs are something she should know about too.