Forum

Hello, I’m newly diagnosed

Hi I’m Paul,

I’m 49, I was taken into hospital for a suspected stroke and diagnosed with RRMS 3 days later following an MRI, this was back in May. I lost all feeling on my right side which they treated with steroids. After several months am now left with just my right hand numb, I struggle walking because of balance and my foot drop, horrible vertigo, sharp fleeting headaches, constant fatigue and it feels like I’m thinking through clay. I’m wondering if I’m still in my initial relapse or is this how life is now?

Hi Paul
In the short time I’ve had with MS (Diagnosed in Feb, but actually had it for 10 years or more), one thing we can say is that there are almost as many flavours if MS as there are sufferers.

There are certainly some incidences of RR which progresses, namely it doesn’t fully reset after each flare. Whatever variant you have, be positive about all the good things you have in life.

2 Likes

Hi Paul,

I am not a medical professional so could be totally wrong.

Your description reminds me of relapses I have had. No two cases of MS are identical, but many symptoms and conditions are common to many people. I had relapses that rendered me bedridden, however subsequent to my relapses I tended to recover to 80-90% of the previous condition. I have had decades of pretty good health and life mixed with some not so good bits. I was able to continue working and travelling. So I recommend you live each day as it comes.
All the best
Mick

2 Likes

Hello Paul

Welcome to the forum, I’m sure it’s still a bit of a shock to the system, but we’ll do our best to help you adjust to your ‘new normal’

I’ve found that relapses are just like MS, they’ll do their own thing each and every time. This means there is no single answer to your question. Sometimes you just have to live with what you’ve got right now and wait to see what happens next.

I’ve had relapses that take months and months to fully resolve. It sometimes takes so long that I’m not certain whether it fully resolved or I just got used to altered sensations. Equally, I’ve had relapses that were treated with steroids right at the start and they’ve fully remitted. As I say, a relapse is an awkward git of a thing.

I would imagine (obviously I’m not a neurologist or any kind of expert - just someone with 24 years experience) that you are likely to get some improvements in some symptoms - but some of them you’ll have to work at.

Re vertigo (see https://mstrust.org.uk/a-z/dizziness-vertigo ), there are exercises you can do. If you have a physiotherapist, s/he/they may be able to help. But here’s something you can try: sit on a bed, making sure you are stable (hold onto a bedside table or something). Fix your eyes on a point in front of you and slowly move your head from side to side, keeping your eyes on that point. Do this for as long as you can (I tend to count plus record the time on my mobile phone). Wait until your head stops spinning and you feel stable again. Then do it again, trying to extend the time. Do this several times a day. Honestly, I’ve found it works. But definitely get some advice from a physiotherapist if you can.

With fatigue, it’s a case of managing it. Try to break jobs up so you don’t overdo it. There is no ‘pushing through’ fatigue. It doesn’t work. Rest as much as you are able and try to work out simple ways of doing things to take as little effort as possible. Again, here’s a leaflet from the MS Trust: https://mstrust.org.uk/a-z/fatigue

Foot drop is another matter. It is very difficult to cure foot drop. But there are orthotic devices you can get to help. You could get a referral from your GP or neurologist to your local hospitals Orthotics department, they can fit you with a type of brace called a Ankle Foot Orthosis (AFO). Or your physiotherapist could get you a device called a Foot-up. If you want to get your foot drop sorted more quickly, you could buy a device. Either look at a Boxia (BOXIA A.F.O. DROP FOOT | Orliman), or a Foot-up (https://www.ossur.com/en-gb/bracing-and-supports/foot-and-ankle/rebound-foot-up) Both do similar things, they’re very simple ways of attaching your shoe to your ankle to enable you to walk. You can buy both from that online store that has the same name as a South American river!! Each costs about £50. Ive used both and they work in a low tech kind of way.

Ultimately, you could see if your local NHS will refer you for what’s called Functional Electrical Stimulation (FES). It is a way of stimulating the Peroneal nerve (which is where the action of lifting your foot comes from) to enable your foot to lift when walking. Most areas will pay for FES. Except for mine - West Sussex (dam them!). The FES is definitely the best means of coping with permanent foot drop. (Yes I’ve used that too - self funded!)

Your next step, once you’ve sorted out what symptoms you are left with from your big diagnostic relapse, is to see what disease modifying drug (DMD) you can take. These are designed to reduce the number and severity of relapses. Your MS nurse and/or neurologist should be discussing these with you.

I know there is a massive learning curve ahead of you and I’ve probably just overloaded you with information. Hopefully some if not all will help. I definitely think referral to a physiotherapist should be top of your agenda. A good physio will not only help you out with most of your residual symptoms, they can assist with equipment and services to make life easier.

Best of luck.

Sue

1 Like

Wow Sue,
what a wealth of information, thank you. I do have a great physio who has given me exercises for my balance. She got me the bungee thing too, and I find it helps an awful lot.

I will definitely do your eye exercise for the vertigo.

I have a phone appointment with my neurologist next week (at long last!), which I believe is to discuss DMT options. I’m, probably wrongly, pinning everything on that call.

Thank you
Paul

Thank you so much for your reply. I’m really hoping that things will return as close to almost normal for me as it can. It just seems a million miles away at present. And not being able to talk to anyone hasn’t helped

That is so good to hear, I am hugely grateful to you for your reply. It has been a rollercoaster journey so far and I don’t think the heat recently has been helping either. But I am glad I now have a caring community I can be part of.

In the light of next week’s phone appointment, have a look at (yes another link!) MS Decisions aid | MS Trust

What’s important about DMDs is cost v benefit. By which I mean relapse reduction rate versus possible side effects. But it will also depend on what’s available on your area.

I’m glad I’ve been helpful.

Sue