still in limbo but have got new symptom

Hi all

Can someone help me - I am still being investigated for poor balance issues (stumbling up to 30 times a day) but for the last 3 weeks I have started to veer off to the left when walking - unconnected with stumbling. I know left balance mechanism isn’t working properly (hospital told me).

I have stumbled 23 times today - 20 times its been to the left - fell against a stranger yesterday (bet he thought his luck was in) and again against a bus, lost my balance on a flight of concrete steps in London a few weeks ago and managed on another recent occassion to fall off the path onto the road.

Still have problems with vision - double vision for the last 8 years - optician last week thinks its neurological as eyes seem OK on exam but he thinks the processes to the eyes are getting mixed up. With this and the balance probs (nearly 2 years relentlessly and worsening) and now the new veering, is this a sign of ms?

Take care

Spiderwoman

Hello Spiderwoman,

If you are experiencing balance problems along with your eyes make an appointment with your doctor tell them your problems and ask to be referred to a neurologist. To keep losing your balance is not a good sign, for one if you should fall you could break a bone. OIf your eyes are blurred firstlymsee an optician and if you’re still not happy go to an eye hospital like Moorfields (The Best). I wish you luck,

Janet

Hello Janet

Thank you for getting back to me. It was nice to read your support - I am going back to opticians this week.

Having a slightly better day today - only 9 stumbles so far today but not been stumble free since this started nearly 2 years ago.

Hope you are getting on OK.

Take care

Spiderwoman

Hello there! Not sure how I missed your post, sorry.

Sounds really miserable :frowning: Have you asked to see a neurophysio? They can give you exercises that can really help with balance. They will also help you with stuff like walking sticks which should help to prevent the falls. Definitely sounds like you need to take preventative measures - falling into roads and down steps is not something to take lightly!

Could it be MS? Well, yes, it could, but there are a lot of other things it could be too. The only way to find out is to see the neuro and take it from there.

Good luck!

Karen x

Hi Spiderwoman,

Glad to hear that you are going to the opticians, do let us know how you get on. As Karen said consider a stick I use one and it has stopped me falling many many times.

Good luck.

Janet x

Hi Karen (Rizzo)

Thank you for your post of support. What sort of exercises does neurophysio do - I went down the ENT route first and was given vestibular rehabilitiation exercises which haven’t done a thing - that involved a lot of head nodding and shaking - maybe this is something different you know of.

I have used a stick for quite a while now - I think it’s that which has saved me from falls, though the bus, perfect strangers, fences and a recylcle bin have had their uses to in ‘catching’ me. I use a stick on my bad side (the left) but should I be trying to counter balance and use it on the right side? Also, do many people ‘veer off’ with MS - I had an aunt with it who I was too young to remember but people accused her of being drunk due to the way she was walking but don’t know her exact gait problem.

Would be pleased to hear your comments.

Kind Regards

Spiderwoman

Balance exercises are mostly about practising. So if you are bad at standing on one leg, then you have to practice it, etc. The neurophysio will do a proper assessment and work out what you need to practice most + give you ways of doing that well.

I was told that you should use a stick on the good side, so if your left is your bad side you should hold your stick in your right hand. (When you swing your arms naturally, the right arm moves forward with the left side.)

I have had phases of “veering”. Last year I walked quite crab-like for a while, with my left side leading. Noticing it is the first step to doing something about it. A neurophysio can help with that too.

Walking like we’re drunk is pretty standard for a lot of MSers :frowning: It’s either poor balance or bad legs or numb feet or… they do tend to mean we’re not exactly steady!

Your GP can refer you to a neurophysio. Definitely worth a try :slight_smile:

Karen x

Sounds awful Spiderwoman and partic as you’ve not even got a dx yet - that must be hard. I’ve already posted somewhere about my balance problems when I first got this thing making me think I was experiencing an earthquake!!

Would a walking stick help? - those outdoor hiker type ones aren’t quite as naff as the oldfashioned cane ones.

Hope it improves for you soon and all the best.

Mr S

I was tempted to say you could put something heavy in your right hand pocket, but not sure whether MS and attempts at humour go together very well!

Hi Mr.S,

I feel that my sense of humour keeps me going especially when I’m going the wrong way! Very often I will get out of bed and head to the door and instead I find I’'m either standing in front of the wardrobe or back sitting on the bed. I’m always complaining about how the door has moved or the wall has moved. Sometimes the kitchen is in the wrong direction! I think this is all part of the joy of MS!

Karen I have tried very hard to do what you say should be done, it is my right leg that is bad but find I just cannot co-ordinate if I use my stick in my left hand, but saying that to go upstairs or downstairs I can and find it easy. I feel my brain is just not willing to help me. Still waiting for a physio appointment, so maybe they will be able to lead me in the way to acheive this.

Janet x x

Not diagnosed, but suddenly veering off a few degrees to the left was one of two early symptoms (other being over-balancing) that my left leg was starting to play up. Subsequently started to give way repeatedly. Must admit, I’ve started pulling back away more from kerbs and factoring in ‘fall over time’ when thinking about crosssing. Have you noticed that it is less likely to happen when walking briskly? With regard to the eye problem, it could be that there is neurological damage hidden behind what can be observed through the front. An MRI might show this.

Hi Mrbobowen

Thanks for your post - yes I have to keep reminding myself to walk in the middle of the pavement - and yes, I have also noticed stumbling is less likely to happen when walking briskly ( I wonder why that is)? Mind you, when I do walk slowly, it’s usually because I’m knackered after work or shopping. Your comment on the eye probs may also be right - I’ll be seeing GP next week and pushing for another MRI. The eye theory may account for 2 episodes of disturbed vision (one, central visual field loss and the other a weird repeated pattern of large and small circles).

All the best.

Spiderwoman