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Relapse follow up

So yesterday I had my 6 week follow up after being put on steroids for a relapse, the consultant wanted to know if I had felt any improvement, which in all honesty I haven’t, in fact I would say my walking is a little bit worse, definitely less distance.

Personally I think I had my relapse around 6 months ago maybe even longer when I was constantly contacting the MS clinic as I felt that my symptoms we’re changing, so even though my consultant put me on steroids 6 weeks ago I feel it was too late and the different consultant that I saw 6 months ago missed an opportunity to calm things down by offering the steroids at that time.

Oddly every time I have an examination by the consultant or physio they all comment on how strong my legs are, yet when I stand up and try to walk my legs feel as if there’s no strength at all ?

The consultant explained about the muscles getting quickly fatigued due to disruptive nerve signals but he also done a bit of an odd test on me as well. He took me out to the long corridor,stood in front of me, held my hands and told me to count backwards from 100, counting down 7 digits at a time, whilst we walked, the result was that firstly I could hardly get down to the mid 80`s without getting confused and had to think really hard what the next number was,but more importantly I actually walked slightly better !

The consultant explained that around 20% of people with MS concentrate so hard on their walking that the brain actually exaggerates the MS symptoms. He’s not saying MS is all in the head, but was trying to explain that if you start to think about the MS and how you are going to walk as soon as you get up to walk your brain very quickly learns that this is how your supposed to walk.

So by trying not to concentrate just on the walking it can help to put the brain back into a mode where you don’t have to think about walking you just do it naturally.

Obviously you’re not going to start running marathons and the weakness ect is still the underlying problem, but by trying to not to instantly think about it your walking can become to feel a bit more natural.

Having said all that I think even though there’s probably some sense to what he said, it’s sounds far easier said than done,it’s actually very hard to just switch off from how you’re going to walk when you have MS, hence him getting me to count backwards whilst we walked,taking my concentration away from my walking. I definitely know without doubt that when I walk I only concentrate on my walking and nothing else, if I try to relax and not concentrate I feel like I’m going to fall straight away.

My whole body just tenses up and I walk like a robot.

This is where he reckons the brain has concluded that it has to be over involved in the walking, hence the over active tension when trying to work the legs, which is leaving the muscles quickly fatigued as they are moving unnaturally.

Long story short, try to relax and not think about the walking, apparently the brain will learn not to get over involved and in time you may find that your walking is less rigid and more fluent.

Yep, far easier said than done, and the consultant agreed, especially if like me you’re a tense person to start with !

Im also guessing as well that this theory mostly works on people who’s MS still has fairly good nerve conduction and the ability to still walk, albeit not great.

That’s the impression he gave me.

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Hi

thanks for the info

walking in a straight line can be difficult for me- it’s not bad but I do overthink it. Maybe I should try to relax and see how that goes too :slight_smile:

I do think he has a point.

For example if I’m having a poor day with the walking, which theses days is every day, I can still get on my exercise bike and peddle for ages without issues, yet when I get off my walking is just as it was, very bad !

Yet I can get straight back on the bike and go again peddling away without problems, get back off and same story with the walking.

The consultant tried explaining it to me something like my brain remembers how to ride a bike, it just feels natural to peddle in a smooth motion, so your legs will comfortably just keep moving and peddling without issues, but the brain has now taught itself to instantly tense everything up when trying to walk because thats how I’ve been dealing with my walking problems.

Constantly thinking about each step has become “normal”, rather than just doing it without thinking.

He’s certainly NOT saying MS is a mind over matter thing, in fact he said the total opposite, MS is a real illness and I’ve got it, but I think what he was trying to get across is, just try to start walking, bit by bit without over thinking about the actual actions of walking, if I’m walking along with someone keep the conversation going instead of shutting off and only concentrating on the legs moving step by step, because thats exactly what I do at the moment !

I’ve even found myself walking behind someone looking at their legs moving and trying to copy their movements and steps.

But like I say, it’s very hard NOT to keep thinking about your next step.

Hi

That’s excellent advice for anyone it helps.

I did notice though that the doctor told you 20% of people with MS concentrate too hard on their walking. So it’s not going to help everyone.

I know for example that I won’t help me. I absolutely have to concentrate on walking, just as I do everything I do. No more multitasking for me. If I’m having a conversation and trying to walk my few metres at a time (with FES and a walker), I fail to do either properly, my feet get tangled up and I lose the thread of the conversation. My husband is forever having to say, ‘one thing at a time!’ as I fall heavily into the wheelchair again and ask ‘what did you say?’ (This is because of slow processing speeds, cognitively challenged!)

But, having said that, it’s worth giving it a go. If it works for you, then it works. It’s just another one of those examples of the differences between us.

Sue

Thank you for this - really interesting!

My trouble is that my automatic walking circuits have never been updated to correct for the the fact that the bad leg doesn’t lift the foot high enough to avoid tripping, and not in a hallucinogenic way. :slight_smile: If conscious concentration wavers, I hit the deck.

Still, I can definitely see the risk of trying to bring under conscious control something that works more smoothly when left to the automatic systems, so I’ll certainly bear that in mind and try not to interfere more than necessary!

Thanks for sharing.

Alison

Not sure if anyone here has registered with the MS UK Register ?

I was asked to register when I was first diagnosed, apparently they are linked up with certain MS clinics throughout the country and after you register it’s a bit like keeping an online diary of all you symptoms, meds, physical abilities, treatments ect ect.

You can make certain entries daily into your “diary” and then every few months your asked to fill in other questions, this info is analysed by the UK Register and they assess how MS is acting throughout out the country.

You can also give permission for your medical details from your clinic to be open to the Register, I’m not sure if you have to give permission but it’s all confidential if you do ?

Getting back to the topic of over concentrating when trying to walk, this is one of the main questions that is always asked on the UK Register when you fill out the questionnaire on walking ability and how it has changed over the last few months…

I know that Morriston Hospital MS clinic have joined up with Swansea University and are linked in with the Register and how data is collected and analysed.

So I’m guessing this is where the 20% figure comes from when my consultant said that this is the amount of people with MS who have been found to be over concentrating on how to walk or take their next step.

The Register is a good tool to asses yourself and compare how MS is affecting you compared to others.

Also if giving info to such sites, which is regulated by the authorities helps to collaborate as much info on MS as possible, then personally I think it can only be a good thing.

Everyone with MS is a little different in how the MS effects them, so I think the register was set up to try and pool as much info together as possible from different parts of the country so that MS clinics and neuros get a better understanding of this crap illness.

I would recommend anyone with MS join up.

www.ukmsregister.org/Portal/Home

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Brilliant. Thanks jactac. I didn’t know about it. Signed up and completed the questionnaires for now.

Sue

I’m not sure but I think you can check on the site if your own MS clinic is part of the register and involved in data collection from that and other clinics.

You can still join and input your own info though and it’s still pooled with all the other info.

Apparently the MS neuro at the clinic in Morriston is one of the neuros that got together with some others from around the country and decided to put a study register together.

I think it’s also endorsed by this site, the MS society ?

I also opted to have my clinical records accessed by the register as I cant see it doing any harm in them looking at what other meds or illnesses I might of had that MAY have a bearing on MS.

I think they ask you this when you register or you might need to contact them ?

Theres definitely a link on there somewhere about opting to have your medical records accessed.

I just done a search on this site for the UK MS Registry and nothing came back, which is a bit disappointing seeing as this site is shown on the registry site as approving it !!

Heres a bit on the home page of the UK Registry that mentions this site…

"About the MS Register:

How many people in the UK are living with MS? How do the different types of MS affect different people? Are there regional differences in how people with MS receive treatment?

Currently, the answers to these fundamental questions are largely unknown. With an estimated 100,000 people living with MS in the UK, it’s time we increased our knowledge and understanding. MS Register researchers are working to find out more about MS and the impact it has on the lives of those it affects. To do this, we need your help.

Everyone is different, and everyone experiences MS in a different way. That’s why your story is so important to us.

By joining the community of people in the UK affected by MS and contributing to the MS Register, you will be directly involved in generating new research. The knowledge we gain from this study will fuel campaigns for fair, relevant policy and improved healthcare for people living with MS.

The online survey is a collaboration between the UK MS Society and Swansea University, where a team of experts are working to collate and analyse data. In addition to this online survey, a clinical study is taking place. The clinical study and online survey form the MS Register. You’ll find more details about the clinical study in the NHS Centre section below."

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Because I registered earlier, they sent me an email saying that if you are cared for by one of their partner sites you can have your clinical records included by contacting them the partner sites are Nottingham, Swansea, Belfast, Queen Square, Shrewsbury and Teford, Basildon and Thurrock. If you’re not cared for by one of these, your clinical records can’t be included but you can still be part of the MS Register. It doesn’t take long at all to complete their questionnaires. And I will be reminded to do so again in 3 months.

Sue

Also, if you do a search on U.K. MS Register, rather than Registry, it works.

I meant a google search rather than a search of the MS Society. Which doesn’t work!!

Odd though why the MS Society do not promote it a bit better on here ?

Odd why it’s not better publicised at all. And as you say why the MSS don’t publicise it since they sponsor it. As I said earlier, I’d never heard of it. And when you posted the link I clicked on it, thought, this is worthwhile and registered. Easy as that. And it took 20 minutes start to finish.

It’s actually a really usable speedy questionnaire. Which is a bonus, if it takes an hour, you’re less likely to finish the thing.

Like I said, thanks for posting the link.

Sue

Hi Jactac. As you know I live in SE Wales, but my local MS Society network office told me about this, think they had been on a training event. Interestingly, on the newly diagnosed day I attended recently, another newbie asked if there was something that tracked people’s experience. I stuck my hand up and mentioned the ms register. Was a bit of a silence from the medical bods from Cardiff uni and Cardiff uhw, took me a few mins to work out, of course ms register is Swansea based. Rival unis! Personally I couldn’t care if it was Martians from space that found a cure, although I don’t like some of the animal testing that I’ve heard about in the process of drug trials.

I understand the bit about rivalries between uni’s, but I’m just surprised that the MS Society do not push the Register a bit more, after all the whole idea is to get as many people registered s possible so that a better collaboration of results can be analysed.

It actually states on the UK Registry site that its a “collaboration between the UK MS Society and Swansea University”, yet no mention of the study or site on here.

Very odd !

Time for a mod to explain perhaps ?

Right then before a mod gets on his/her high horse I’ve done my own snooping around on this site.

So, go to the home page click on the “Research” tab at the top of the page, then once that page opens, at the bottom of the page you’ll see a few tabs that can be opened, click on the “Get Involved” tab, this then gives a small list of links that you can get involved with !

The top link is, hey presto, “Join The Uk Registry” !!!

To make it easier heres the link to that page .

www.mssociety.org.uk/get-involved/msregister

Or even easier heres the link again the the UK Register home page .

www.ukmsregister.org/portal/Home

Note to mods, just a thought, maybe it would be an idea to mention/highlight the Register a bit more clearly,

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One last thing,

Anyone who does register and wants their own clinic to be informed of their answers/responses or how the MS has been effecting you or changing over time, you’ll need to fill in a short declaration on the " Share your responses with your NHS Team" page**.**

You just click your hospital from the list, tick the box and you should then type in a “STUDY ID CODE” .

Now this code is given to you by your clinic when first diagnosed, at least it was with me, but as the Register has only been running for about 5 years many people would not of been given this code or even asked to join the Registry.

However if you join the Registry but have no code and DO want your clinic to be notified of your responses there’s an email address on the same page that you can contact the Registry to request a code, you can even ring them direct if you want to 01792 606 354.

I actually lost my code that my clinic gave me so I emailed the Registry direct for a new one, it’s easy.

You can still join the Registry though and use it exactly the same as anyone else, even if you dont want your clinic to see your responses, personally I did want my clinic to see my responses, as I feel it’s another way of keeping open the door of communication.

Anyone would think I had shares in the bloody thing, I dont, but I do think the more MS’ers than join up the better.

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Thanks jactac for your input. I completely agree we all need to pull together in this battle. Stronger together.