Barts-MS rose-tinted-odometer: ★★★★★
How many of you people who have MS (pwMS) have balance problems; i.e. when you stand and close your eyes or try and stand on one leg you tend to fall?
Since my accident, I have been having problems with balance. I first noticed it when I tried to stand on one leg and I would feel unsteady. When walking to and from the bathroom at night I tend to veer to one side. I suspect my balance problems are due to vestibular problems as a result of my head injury and possibly due to my neck injuries. I say possibly due to my neck injury as the concept of cervical vertigo or cervicogenic unsteadiness is very controversial in neurology. But as there are specialised receptors in the neck that pick-up neck rotation it is possible that these have been affected by the injury and surgery.
Despite my balance problems not affecting most things I do, it makes it difficult to complete what I call routine or standard daytime tasks. For example, getting dressed in the morning; when I put on underpants or trousers I have often have to sit down. Leaning forward to pick-up things off the floor is now very difficult I as I tend to tip forwards. I can’t stand on my tiptoes to get things off a high-shelf; I now have to use a chair. These things add up and are a sign that things are not right.
I have never specifically focused on subtle balance issues in my MS clinic, which must be very common in pwMS. I would be interested to know if any of you suffer from balance problems? Have you been referred for a physical assessment? Have you has specific rehabilitation exercises to address the issue? Has the rehab helped?
It is clear that since I became aware of my balance issues and I have started doing specific exercises to address the issue, things have improved. I can now stand on either leg unsupported for over a minute when just a few weeks ago I could only manage to do this for a few seconds. Whether this will translate in better functioning remains to be seen.
There are a number of well-established rehabilitation programmes that have been shown to help with balance problems. So my advice to you is rather than suffering in silence ask for an assessment and a referral for vestibular or balance rehabilitation. If you don’t try and correct the problem it is likely to get worse. And don’t accept no for an answer. There are also a lot of online tools available to help you with self-assessments and self-rehabilitation if you are that way inclined.
Kalron et al. The effect of balance training on postural control in people with multiple sclerosis using the CAREN virtual reality system: a pilot randomized controlled trial. J Neuroeng Rehabil. 2016 Mar 1;13:13. doi: 10.1186/s12984-016-0124-y.
Background: Multiple sclerosis (MS) is a multi-focal progressive disorder of the central nervous system often resulting in diverse clinical manifestations. Imbalance appears in most people with multiple sclerosis (PwMS). A popular balance training tool is virtual reality (VR) with several advantages including increased compliance and user satisfaction. Therefore, the aim of this pilot RCT (Trial registration number, date: ISRCTN14425615, 21/01/2016) was to examine the efficacy of a 6-week VR balance training program using the computer assisted rehabilitation environment (CAREN) system (Motek Medical BV, Amsterdam, Netherlands) on balance measures in PwMS. Results were compared with those of a conventional balance exercise group. Secondary aims included the impact of this program on the fear of falling.
Methods: Thirty-two PwMS were equally randomized into the VR intervention group or the control group. Each group received balance training sessions for 6 consecutive weeks, two sessions per week, 30 min sessions. Clinical balance tests and instrumented posturography outcome measures were collected upon initiation of the intervention programs and at termination.
Results: Final analysis included 30 patients (19 females, 11 males; mean age, (S.D.) = 45.2 (11.6) years; mean EDSS (S.D.) = 4.1 (1.3), mean disease duration (S.D.) = 11.0 (8.9) years). Both groups showed a main effect of time on the center of pressure (CoP) path length with eyes open (F = 5.278, P = .024), sway rate with eyes open (F = 5.852, P = .035), Functional Reach Test (F = 20.841, P = .001), Four Square Step Test (F = 9.011, P = .031) and the Fear of Falls self-reported questionnaire (F = 17.815, P = .023). In addition, significant differences in favor of the VR program were observed for the group x time interactions of the Functional Reach Test (F = 10.173, P = .009) and fear of falling (F = 6.710, P = .021).
Conclusions: We demonstrated that balance training based on the CAREN device is an effective method of balance training for PwMS.
Crowdfunding: Are you a supporter of Prof G’s ‘Bed-to-5km Challenge’ in support of MS research?
CoI: multiple
Twitter: @gavinGiovannoni Medium: @gavin_24211
Yes – definitely an issue for me (everything you describe is familiar). This has become more of an issue in the last couple of years exacerbated by hip fracture two years ago and definitely less activity over lockdown. Balance obviously has a big impact on my walking and I now need a rollator for outside walking. Confidence also an issue. I have regular private physio ( generic re core and overall strength and mobility) and some balance work but would be interested in any online assessments/exercises you can recommend. I have also been recommended OTAGO training
I deffinately recognise all that you have described. I think I have got used to them over time and didn’t realise some of them were unusual until reading this.
A very noticeable one for me though is when walking alongside someone else and talking, I can’t turn towards that person to glance at their face or turn to look at something that isn’t straight ahead, without becoming very unsteady.
I have just managed to get a referral locally to a neuro physio so hoping they will be able to help. It is worth persisting to find what is in the local area as my GP didn’t know the neuro physio service existed, it was only when I self referred to the general physio service that they pointed me in the right direction and then the GP made the refferal.
Totally get this
“ A very noticeable one for me though is when walking alongside someone else and talking, I can’t turn towards that person to glance at their face or turn to look at something that isn’t straight ahead, without becoming very unsteady.”
Very frustrating that the GP didn’t know the neuro physio service existed and you’re right it’s often so much down to the individual MSer persisting – which in itself is hard work – and often you don’t know what the right treatment should be. Prof G says ‘ don’t take no for an answer’ …but in my area currently (even without Coronavirus) we don’t have any specialist to ask the question to – no MS nurse working at the moment, consultant appointments once a year and from my experience (as above) GPs are just that – general practitioners . However If you have an MS Therapy Centre do contact them.
I recently started physical therapy with a vestibular therapist after my (now former) neurologist kept insisting that I had BPPV despite months of the treatment for that had zero effect on my significant issues.
I made the switch to a MS specialist who immediately referred me for vestibular therapy and a month in, I’m seeing noticeable improvement.
So yes, don’t just live with it and don’t take no for an answer. And definitely don’t let a bullheaded doctor keep trying the same crap because “he’s right and you’re wrong”.
I too was told By two doctors I had BPPV because “dizziness not common in MS” and didn’t believe it because nothing they tried helped. Dizzy spells so bad they’d induce vomiting. Researched myself then asked GP for a PT Rx and found a vestibular therapist. It was very helpful! Depressing that I had to diagnose and treat myself! Do not see either of those doctors anymore.
Later confirmed with MRI it was a relapse. Would the relapse have resolved on its own without that help? Who knows but I felt like I was taking action and it taught me how to pay attention to and assess different aspects of my balance I hadn’t thought about which I’m sure will be helpful. I don’t know why so many drs insist on saying ms doesn’t cause dizziness. It happens more than people think. Vestibular therapy should absolute be available for ms patients if needed.
I think there is a resistance by docs to assign all symptoms to MS but as a result There are certain symptoms related to MS that get mislabeled or under treated…..bpPv vs. vestibular dysfunction, I heard both but responded only to vestibular retraining. I really don’t understand why so many neuros insist that it’s bppv, especially in the event that the onset of dizziness and balance issues correlate with an acute attack… maybe a study is in order as to what neuros think when it walks like a duck and talks like a duck? ?? 😉. Unfortunately, I think there are many other underrecognized MS related disorders such as: uncoordinated swallowing (it’s anxiety); poor physical endurance (lack of motivation); neurogenic bladder (age related flow issues); slower processing speed (normal aging); poor hand grip strength (it’s a problem?); respiratory muscle weakness (overall deconditioning); PBA (emotional instability); ptosis and facial weakness (normal facial asymmetry); good self advocate (neurotic). I appreciate that you Prof. G. Are Seeking to better understand the MS experience through your own personal challenges. We all benefit when we seek to understand each better. Maybe a neuro will read this and pause before giving a MSer a knee jerk label of BPPV.
Hi Prof G And I hope u are improving, I have balance problems but I’ve not been offered any help so I don’t know what to do about any of it 😳
I think a better understanding of what specifically is ailing you is in order.
MS is similar in that damage is done and Healing does happen. I call it laying down new track.
You have several possibilities. Brain, spine and pelvis. Have you checked orthostatic blood pressures? Are you having pain and working through it?
Compression hose may help. You’re the perfect patient for another PT referral with new goals. A reacher/grabber could help you pick stuff up off the floor. We got a device called 60 up. It’s to help with balance. My motivation is my biggest barrier. There it sits. Your motivation is your strength.
I have had balance problems for a very long time. As long as I can focus on where I am going and have both eyes open I tend to be OK, although when I get tired, I veer to the left no matter how hard I concentrate on my path. At night, I cannot walk without banging into walls, but nightlights everywhere helps with that. I cannot stand for more than a few seconds with my eyes closed without falling sideways. This predates a period of quite severe vertigo, for which I did have vestibular therapy. The therapy did not seem to help at the time but the vertigo did slowly resolve. The balance problems remained. I don’t really feel like I would bother with PT for it unless it was much worse than it is now – I get tired of PT.
As a neuro physio who specialised in MS for 10yrs + this is a huge part of what my role entailed. I find the vestibular system and balance mechanisms fascinating and very changeable in most patients.
I agree about the role of cx spine in balance.
Keep going with the exercises!
I notice when I haven’t been doing my balance exercises, even the simpler ones like standing on one foot while brushing my teeth, etc. Practice does help, but my balance sometimes just gives out regardless. Maybe core strengthening would help also…
Sorry you have had such troubles, your accident has really had some bad effects and I hope you continue to steadily recover.
My MS made itself known by a debilitating episode of labrynthitis but I was not scanned and not diagnosed for some years and by that time I had quite significant but subtle balance issues. Getting dressed, standing on one leg, walking in the dark, going down steps with no handrail was frightening etc and I had quite a few falls. Only when I was assessed by a neurophysio did I realise how hesitant and uncertain I had become of moving around, even sitting and standing.
I was given some simple exercises and started pilates (floor based) and later yoga when I was more confident but still can’t do many of the standing postures. It has made such a difference and I so wish that all pwMS could get a good physio assessment and plan. Without it I think I would be still taking small steps and lightly holding onto walls wherever i went and getting more and more limited in my mobility.
You can also get a Physio assessment at some MS therapy centres and there is advice and exercises on the MS Trust and Society websites but face to face assessment is best.
Ah yes! Standing on one leg: it requires being able to lift the other in the first place. When it’s safe, I will see a neuro physio (privately- because after 2 years I have just been given a telephone appointment). This is not to complain- it’s just to contribute to the overall picture of disability management and its shortcomings. I am convinced that one can do a lot from within, but some guidance is helpful.
Wellcome to my world with ms.
My comment as well. Plus Tier 4 restrictions mean that it is now impossible to be assessed by a neuro physiotherapist at the MS Therapy Centre
How can you not focus on balance problems with MS patients when that is one of the main symptoms of MS? Why are you asking MS patients if they have Balance issues, which the majority of us have? That’s the first thing the Mayo Clinic neurologist asked me when I was being diagnosed. He even explained it to me (something to do with the optic nerve). It’s worse when it is dark. And…. how can you possibly compare your unsteadiness or balance issues with those with MS? I’m just trying to figure out if you’re really that incompetent as an MS specialist or if you’re just looking for discussion and if you are really trying to compare your situation with people who have MS?
We do but not as part of the routine screen early on. Most attention is around falls prevention.
I’ve been tracking balance while showering and specifically when shampooing and rinsing hair while eyes are closed.
Used to exaggerate a broader base stance to compensate.
Things are better which may simply reflect practice, stronger cord strength, mproving balance or natural course of MS or medication management or all of the above.
Tai Chi does wonders for balance though it´s one of those things you have to continue to do…
I agree that physio is very important but the depressing fact is that it really needs to be ongoing, if my experience is anything to go by. A lot of issues: – it’s fine doing exercises for a couple of weeks but who has the motivation to keep going week in , week out? My physio told me that it takes 500 reps of any exercise before the brain even recognises that it’s being asked to make a change. Added to that, (IMO) there’s probably more than one area that needs targeting, so what you’re offered on the NHS is unlikely to be more than a starting block. Improvements may be slight and only detectable to a trained eye but very significant in the life of the individual. Another of my physio’s mantras is: disability comes in tiny steps – in other words, it can be such a gradual process that it goes unnoticed until it’s too substantial to respond to physio intervention. None of this is easy!
Yes. Not trying to overshadow or dismiss what you’ve experienced but my balance problems are definitely on the extreme spectrum for people who have MS lol. They have been for years. I’d been to a lot of physical therapists. None of them knew anything about treating people who have MS.
The very best one I’d worked with had just graduated from ordinary PT school and had only been seeing any patients for about 2 months. I had just been diagnosed after having had it for 8+ years and could barely walk. The first neurologist I saw wanted to admit me for up to 6 weeks for plasma exchange (2 rounds of IV steroids had not helped me, MRI’s still lit up like crazy) followed by inpatient PT. I wouldn’t let me because I have kids and no one to take care of them.
She was the first PT I’d ever been to. My dr didn’t know anyone to refer me to and he’d only given me a prescription and I had to find my own PT. None in town (my neurologist was an hour away) had experience treating PWMS. I thought great, this girl has just graduated, she wouldn’t even know what to do with someone who’s broken their ankle lol. Turned out, she was fascinated and researched ways to treat me. Loved trying things that I found doing research too. I’m pretty sure that she’d gotten the idea to become a neuro PT in the future of her career. Then I ended up moving.
2 years ago I moved close enough that I could go to a physical therapy facility that has a neuro physical therapist. She’s awesome. And we’d started working in the pool at their clinic and that was helping immensely. Probably because I could do exercises that I’d been afraid of doing before because I didn’t want to fall and have severe injuries. In the pool, I didn’t have to be afraid of that cause I definitely wouldn’t get hurt after “falling” in the pool lol. I couldn’t get hurt falling in water.
I’’m saddened that haven’t been to see her in months. I had a long relapse, and now I’m scared of covid. Plus, my 13 year old is doing online schooling and I don’t have childcare. Yeah, 13 is theoretically old enough to be home alone but I really just don’t feel comfortable with that. Her school is having in person classes but they’re offering an online only option and I choose that.
I know that there have been reports of people having neurological problems even shortly after recovering from covid infections during which they experienced mild symptoms. I just don’t want to risk that for my kid. I keep thinking that in the future, maybe in 5 years or 20 years, people will start showing up at to see neurologists with mysterious symptoms and have no idea why. That the doctors won’t even know how to treat them. It scares me so much, especially for kids in the future.
I’m really glad that you’re getting better. I’m so sorry that you got hurt 🙁
I’d love to know more about the things that you’re doing to help with your recovery at home.
I had a severe ear infections at the start of my MS, that triggered the first relapse. My GP gave me the Epley Manouver for vertigo and constant horizontal double vision! ( don’t laugh Prof G).
Because of the double vision intermittent or constant, it could not longer be BPPV, I much later found out.
I’ve been tracking balance while showering and specifically when shampooing and rinsing hair while eyes are closed.
Used to exaggerate a broader base stance to compensate.
Things are better which may simply reflect practice, stronger cord strength, mproving balance or natural course of MS or medication management or all of the above.
The only real symptoms I ever had was unsteadiness/lack of balance problems and complete and utter exhaustion from doing nothing… but even when my balance was at it’s worst I could still function and no one would ever guess there was anything wrong, as long as I looked straight ahead and moved my eyes not my head when I needed to look to the side I was fine, or stoped and turn my whole body, but if I turned my head rapidly I would lose my balance. Tried explaining to my neurologist, and as good as he is for most things, as long as I can stand on one leg etc then I am in his eyes “fine”. And yes I am mostly fine, but it is the extra amount of energy that it takes to remember not to turn your head or bend over quickly, and having to recognise the imbalanced feeling and correct what ever you did that caused it, that takes its toll.
Thankfully although my balance isn’t 100% it has improved slowly, and I was reminded how bad things could be when I had BPPV just before Xmas where turning my head resulted in room spinning vertigo and nausea, thankfully treatment was successful and after a few days of my balance being pretty bad, it is now back to being OKish – which is my normal.
I think with MS although we may have similar symptoms at various times, we all experience them differently. I know that movement and exercise definitely helps my balance. While I can never experience other people’s balance issues, I can appreciate that it has an affect on them and their life. In the same way, Prof G’s balance issues aren’t from MS but it doesn’t mean they aren’t affecting him in similar ways to how MS balance issues affect us, and yes his experience with has made him more aware of them and the impact they can have on everyday life, which is a good thing for his patients, but fingers crossed that he continues to recover.
I really do think that neuro’s should be more aware of balance, and just because pwms can stand on one leg etc, doesn’t mean that their balance is not affecting their life.
“when I put on underpants”. Urgh! Too much information.
I would have assumed that everyone with MS would have some degree of balance issues. You (a neuro) only have to watch a patient as they move from the waiting room to the consulting room. My EDSS test at the end of my annual appointment picks up on the issue I have with my right leg and balance (particularly when I’m asked to close my eyes and put my arms out in front).
My neuro-physio gave me core exercises to do which I couldn’t understand as my issues are with my hyper extended knee. But exercising the core + single leg raises have helped my stability.
PS if you are bored, could you do a post on what MS research stuff we should be looking out for in 2021. It must be better than 2020 which will go down in history as the worse year for advances in MS research (the scrapping of the anti lingo antibody programme was the icing on the cake in terms of an awful year).
Early on (1995), using a wheel chair because it was easier and less painful, I documented for at least a year, my ability to stand on one leg. (Just started Betaseron then). After a year I was up to one minute in each leg, and forgetting to grab my cane. Fast forward 10 years, no more attacks, but I was confident enough to go up on my roof, where a fall-off would have been a disaster. At the time, I coulodn’t run across the street to avoid traffic. Fast forward to today, I just discovered that the pain in my calf and increasing inability to walk was due to “Posterior Tibialis Dysfunction” in my right foot (flat feet since 12 years). My MS doc & I were sure it was SPMS, and my right leg had always suffered the most during an attack in the early days. I changed shoes and now wear them in the house. I was assigned numerous exercises. After one week, I am back where I was a year ago and still improving (I hope). But balance on the right leg is 5 to 15 seconds at best. So in conclusion, “balance” is in part a subjective matter caused by a host of factors, MS being only one of them (for me), but certainly it is there. I suppose you know this, but just wanted to tell my story.
Oops, should have posted elsewhere. 🙁
Lol about the too much information…
2021 will be the year of the imods
Anti_Lingo antibody therapy was a strange approach all along…using a a non CNS penetrant drug to target a CNS disease however they did the same in ALhzheimers…Dizzy Dascal
Mild unsteadiness all the time, it’s part and parcel of my MS. First symptoms were vertigo, which still comes and goes. I’ve had rehab in the past but you need to keep it up on a daily basis and that in itself is a difficult one to maintain. I try to remain as active as I can, my balance problems fluctuate on a daily basis. I compensate with a wider stance and supportive shoes. I’m aware my balance can make me feel like I’ll fall backwards as well as forwards.
Darkness is a definite challenge. Hopefully you’ll make a good recovery Prof G, but us MSers with damage in areas of our brains which deal with balance have to adapt as best we can.
Hey all,
I noticed the unsteadiness I have when I walk is better when I am wearing shoes, i.e. when I walk in socks indoors I feel unsteady at the ankle. If I wear curved/arched flip flops, the balance isn’t as bad (just in case this helps anyone).
Also to those of you who said they had balance problems… how long did your relapses take before starting to feel normal again? I’ve started feeling unsteady since 4th November and not sure whether this could be a reaction to the Ocrevus I started 1st September OR whether this is a badly timed relapse.
Thanks all and best wishes for the New Year 🙂
Hi Prof G,
I really am glad to see that you are improving day-by-day. Other than brisk reflexes, I don’t really have any problems with MSK function right now, just a little on the sensory side after recovering from a relapse quite well. I hope you continue getting better and towards full function!
BW,
F
Definitely have the balance problems you describe, but I’ve always put it down to tight hamstrings. (i.e. not impaired proprioception, just an awareness that I can’t trust my body). Would be glad of any comment on this.
I’m guessing that the number of replies to you post answers your question
“ I have never specifically focused on subtle balance issues in my MS clinic, which must be very common in pwMS. I would be interested to know if any of you suffer from balance problems? ”
The NMSS has put together a very useful document on balance, which you may want to read.
https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Resources_Support/Effect-of-MS-on-Balance.pdf
👍 good resource. Thank you for linking.
Coming to the MS party rather late at 63 I had put my symptoms down to early aging (balance being my early symptom) and the GP never picked up anything out of the ordinary until I turned up at the surgery and repeatedly fell over.
I think because there are so many battles to justify the benefits of DMTs, the physical interventions have been eclipsed by our fixation on drugs.
I live in an area where the MS Nurse works as part of a larger community team which covers other disabilities. There is no ongoing access to specialist Neuro Physiotherapist. I was incredibly lucky that I had access to a specialist exercise class that has been going for around 30 years the last 10 under the MS Society when the NHS dropped it.
There has been interesting work at Plymouth University on the use of Oswestry Standing Frame at home for chair bound pwMS.
You have talked about other things people should do I do believe more emphasis is needed on the role of physiotherapy and brain plasticity to work around damage.
Thank you, great resource ☺️
MS is a continouus trauma,
A future trauma rather than a post trauma.
A constant dubiety about the totality of your body.
A constant dubiety.
I am sorry but you cannot compare the experiences.
Wrong place, apologies. If possible delete.
No leave it never mind, it was about the central page question 😉
I am only 19m and awaiting diagnosis but whatever it is I have had these issues for 2 weeks out of the blue and it sucks. While I guess I can walk for as long as I want, I feel like I will tip over when I bend over (and sometimes actually do tip over). 🙁 this really sucks.