Hello, just wondering how many people on here who have been diagnosed with MS suffer from dizziness and balance problems?
t has been said on here before that dizzyness has nothing to do wih MS but as someone who is a potential MS dx dizzyness is probabaly my worst symptom.
would appreciate peoples view on this
Thanks x
I believe dizziness (vertigo) is a possible symptom, but it’s not one I’ve suffered from so far. Balance problems, YES. However, I feel my balance problems are purely mechanical. I’m aware my balance is pretty poor, but I don’t get any sensation of giddiness/dizziness with it. It’s more like my muscles don’t react properly to correct my balance. It feels like a problem with my legs - I don’t feel dizzy in my head. It’s funny that now you’ve asked the question, I find it hard to explain just what the problem is with balance. But it’s not something I feel; it’s just something that doesn’t work properly. I think it might be partly muscular, and partly because my feet are slightly numb, so I don’t think I get as detailed information about what kind of surface I’m standing on - e.g. if it’s loose or uneven. I think healthy people can feel this automatically, but I have to check by looking. Tina x
Hi,
First time here since diagnosis (diagnosed in Feb) and yes, I get this a lot - in fact right in the middle of my last relapse one of the scariest things was being unable to walk without holding onto the walls to keep me upright. I was silly and carried on going to work which I’m sure made me worse, and none of the anti-dizziness pills the doc gave me helped at all. Due to this they looked at whether I had something strange like Susacs but they don’t think I did - I’m still waiting for an ENT referral to go through to check out other causes and still feel dizzy in certain situations and with my head in certain positions. I tried to do yoga but dizziness caused too many problems, so I started pilates instead, which seems easier for me.
Good to know I’m not on my own with it,
J
Hi
I’m kind of like Anitra; my balance is awful and I have weird lower limb sensations. I do get vertigo, which is certainly somewhere on the ‘dizzy spectrum’.
CP
I get terrible dizziness, but it is not my main symptom
Hi, one of my main symptoms is being dizzy - almost like a tipsy feeling. I carried on going to work and it hit me hard when I went downhill again. I was only diagnosed in December and started Rebif at the end of January. Nearly two weeks later my ‘do’s’ (as I call them) started again I was put on some medication that did nothing Now I have been prescribed Pregabalin and I think it’s them making me feel like I’ve had a few too many but it has helped with the ‘do’s’. It is my head that gets a hot, electric shock like feeling and it goes from my left eye down to my upper lip and tingles. When this happens my right arm/hand gets a mind of its own and my right leg goes quite weak. I was gutted because my ‘do’s’ were down to at the most 3 a week and they have built up to a minimum of 60 a day. They only last a second or two (about the same time as a twitch) My balance is terrible and I crab walk - the village will start to think I’m a secret alcoholic - the best part is that even if I did want to have a glass of wine I can’t with all the medication I’m on.
So I guess what I’m trying to say is that everyones symptoms are differ but a lot overlap and are the same. I knew very little about MS and this site and everyone who posts are a godsend because I’ve learned more on here than from my nurse or neurologist. Hope the dizzyness settles down for you 
Just been diagnosed today not sure what to expect any help will be useful
Yes, me and my other family member with ms have extreme dizzyness. It’s grim. I can be sick, literally, in a 5-10 minute car journey. Or if I,move too fast. Neither of us can stand being patted on the head for same instant dizzy feeling. Am generally okay if I’m still. Similar to Blue Sky, saw Gp Tried a few things with no success. Saw my consultant Neuro - who confirmed its part of MS, but sadly, he said that treatments tended to be unsuccessful as MS dizzyness isn’t caused by ENT problems or vertigo etc. X
Thanks all, the comments are really helpful. My dizzyness is extreme, not even sure if i’d call it dizzyness, more like the world around me moving and tipping or i’m falling a long way down, weird, horrible sensations but goes hand in hand with lots of other symptoms.
I have been given a balance dis-order dx recently as they discovered inner ear abnormalities however seems the inner ear thing may be a red herring as its a condition i would have been born with and there is no reason why it would start giving me such severe problems all of a sudden.
So now back on the road of being looked at as possible MS. Many bits of the puzzle of symptoms starting to fit together now.
xxx
I get odd 5 minutes episodes of dizziness especially if I overdo things or if I do a lot of bending up and down (picking up clutter is a sure way to trigger it). I have only had 1 day where it was very severe and lasted all day making me feel sick and even turning over in bed made me feel dizzy. If it happens a couple of times in a week I take it as a warning sign that I am overdoing things and need to rest up as it means trouble is brewing. It has preceded some of my relapses. Tracey x
Hi,
I don’t suffer from daily dizzyness but most of the relapses which stand out to me have included dizzy issues.Years ago i had such a episode for weeks where whenever i turned my head to the side i got spinning sensations,it did seem worse when lying flat and i describe it as been lying flat on a table and someone spinning it around.This happened twice when in my 20s and dissappeared after a couple of weeks.I went to the doctors and he said it could be Meniere’s Diesease.
The last relapse also included spinning dizzyness but this was on a mega scale, so much so i was convinced i had a brain tumour.I was staggering,spinning and suffering from a bad case of Nystagmus eyes rolling from side to side (it was very scary) NEVER want to feel like that again but if it happens again at least i know what probably caused it
i’m another MSer who’s had ongoing problems with imbalance, it always seemed to get worse when i had a cold, so congestion did affect the dizziness/imbalance problems. if there is little or no light, unless i’m holding something very solid, like a heavy piece of furniture or a wall, i just keel over, because i have no sense of up or down. i found reading up about sensory ataxia and proprioception helpful. if i go out of my house i always use my walking stick, i don’t seem to be getting enough ‘nerve information’ through my legs to be able to fully apreciate ‘where i am’ in relation to the world and therebye walk easily without the stick. i also find that if can’t see my arms, legs, hands or feet, say in bed under covers, i can ‘forget’ where one or more of them is in relation to the rest of me, and i have to move to be able to tell. it all feels related to me. MS is just weird.
i hope you find out what’s going on with your body, i wouldn’t wish MS on anyone, but i also know what hell it is to not have a diagnosis.
take care,
wendy x
I am currently in Limboland, seeing my Neuro for the results of lots of tests in a few weeks. Balance problems/vertigo/dizziness are my main symptoms, along with lots of other stuff. I cannot leave the house without a pair of elbow crutches as I am so unsteady on my feet.
I can totally relate to a lot of what is described above. I have recently had balance tests to see if my problems are being caused by my inner ear, but only one very minor issue with my right inner ear showed up…not bad enough to be causing my symptoms, according to the lady who did the tests.
I have been wondering if they are ever going to get to the bottom of these symptoms, so am interested to hear that they could be due to MS. My Neuro is currently treating them as a separate issue, but I’m convinced everything’s connected.
It’s frightening how life-altering these kind of symptoms can be. None of the usual anti-dizziness medication have worked for me, either. The most frightening thing is that it seems to be getting worse. I am now feeling sick almost constantly, whereas before it was only occasionally if I had overdone it. I can’t even begin to think about the prospect of there being no treatment available.
currently my main symptom, never felt the same since the first attack, but there are times when it is goes unoticed, unless i rrally think about. Its a pain in the ar*e but it has stopped me doin anything i want to do. i’ll never be a gymnast tho 
It’s a symptom that I have constantly. I take Beta-Histine for it so instead of feeling like I’ve had 3 drinks it feels like I have had 1 …
How often do you take the Beta-Histine? I want to get rid of the dizziness/feeling tipsy all the time but if I take many more tablets I’ll rattle when I walk!
Balance is my main problem and I do also have dizzyness on occasion. I can be sitting down and it feels as if I am unbalanced. I just seem more sensitive now to problems that can cause it. For example at work I have two screens, and for a while the laptop screen was lower than my large screen. Looking up and down as well as across was really making me feel ill. Now I just have to look across and even doing that too much can make my head spin a bit.
JBK x
I get it ocassionally would think mine is more a touch of vertigo, it makes me feel awful for a few minutes, it was one of my first symptoms. sometimes though I do just feel a bit dizzy hate the feeling.
I take 1 16mg tablet 3 x a day. It took about a week to start working but it makes life much more manageable.
[quote=dave38]
I take 1 16mg tablet 3 x a day. It took about a week to start working but it makes life much more manageable
Thanks for that Dave - I think I’ll have a word with my MS Nurse IF I can ge hold of her!