This was weird - opinions please!!

[JemmAus]

Ok, my main sx for the last few years, which has been getting worse and worse and has been present pretty much contantly, is balance - or lack thereof.

I think I've said in here before, not so bad at home, but AWFUL at malls etc, outside - anywhere that is bigger than my small house. Mind you, I've been doddering just in my small house lately too.

My previous neuros all said it was "visual vertigo" from migraines. My current neuro said MS but didn't really go into the details.

So i did some reading and discovered one has three things to keep one balanced - visual, vestibular and proprioception. If one of those is out of whcak or not working, say goodbye to balance.

I had full vestibular testing done in hospital 18 months ago. Normal.

My neuro found a lesion on my cerebellum and said that was the problem.

ANYWAY

Today, after having had 6 blinking weeks stuck at home bored out of my brian becaue I've been to unsteady to go ANYWHERE (BORING!!!!!!) I asked my daughter if she'd push me in a hired wheelchair around a shopping mall. I didn't know if I'd be ok in a chair or not - figured as the old neuros had siad it was "visual" I'd be just as wonky sitting as standing with all the 'visual' stimulation in a mall.

So we hired a chair and guess what? It was WONDEFUL!! No "get me out of here" wobbley horror, no vertigo, no nothing. I felt normal, just sitting down.

So does anyone know what this means? Does it mean it's proprioceptive dysfunction not visual?

Cheers
Jemm

PS I was so excited that after I picked up my son from school we went to another mall and did it again! (tragic life , isn't it, when you get  a thrill about going to a mall!)

[Udkas]

Hi there,
I have experienced the same problem, but not to the extent that you do, I can't walk at night without holding onto either my hubby or things, I become very unbalanced.  I had my eyes and ears tested and the eye specialist (sorry forgotten what he was called), said that it was from my brain and not my ears etc. and he didn't think it was from my migraines, not sure how they tell, but my balance is up the ****.. I can't do that test where u shut your eyes and stand. I fall over. and I can't put one leg in front of the other either, but sometimes I can a little bit better, just depends.

Well off to do some work.
Byeeeeee
hope you get better, glad to hear that the wheelchair helped

[JemmAus]

LOL Mike! I've been sitting in the house watching the walls for so many weeks a mall seemed liked excitement central! And I did actaully paint some walls, and watched them dry. HA!

I think I didn't get my meaning across properly. (Oh and i am making endless typos right ow - it's 6am and I haven't drunk my cups of tea yet, so please forgive any errors).

What I was trying to figure out was -

Is the 'busy environment' balance problem proprioceptive dysfunction from MS OR visual vertigo from migraine , considering there was no probs in a wheelchair. For YEARS I was told it was migraine-related, but surely being in a chair would NOT lessen the sensation if it was from visual? Becasue the visual stimulation remains the same?

Or could it be both?

I used to write well and was studying to do journalism at one point, lol, now I can't even make myself clear! Sorry all...

[Mike_Shuswap]

I have balance issues too, but no problems at all with my eyes.

A mall???? Id rather sit in a quiet room and watch paint dry than go to a mall! :o) Oh well, to each his/her own.

Mike

[HVAC]

I liken mine to having my gyroscope broken.That thing in a plane which gives you the horizon I have double vision and vertigo. I use Polly for this reason. She helps me navigate and it is so much easier. I did not go shopping before her.

Alex

[Nancy T]

Jemm--I can't remember the exact term, but the balance-testing expert on the dizziness list I've been reading forever says it's the "seat of the pants" effect--when you're sitting, you're getting a lot of proprioceptive information and steadying effect, which helps you feel more balanced.

I do not have significant balance trouble, and my vestibular testing (two ENGs, seven years apart) has been normal--but my head is always dizzy-woozy. When I'm on my feet and turning my head a lot (such as sometimes when working at the library), I get very lightheaded and occasionally even nauseated. But if I'm SITTING and turning my head, I can endure a lot more.

My feet (the proprioceptive input from them) and touching steady reference points with my hands are what steady me--but having my rear end firmly planted in a chair steadies me even more.

So, presumably the proprioceptive input you're getting from sitting while in the mall helps counteract the visually stimulating and disorganized input you get from that environment.

Migraine damage can certainly cause the "mall effect" (which people with non-MS dizziness certainly suffer from a lot), but I'm sure MS can too.

Using a cane can also help with balance and dizziness (more proprioceptive input, a third "leg" on the ground)--I presume you've figured that out--but of course sitting is better.

Glad you found a way to go shopping! The U.S. economy thanks you! :)

Nancy T. (not diagnosed with anything)

[Lulu54]

I'm laughing at the question - because I also asked my msologist the very same thing the last appointment -
do I really have MS?


his reply was he loves it when his patients as k that question (I was't the first!) because to him it means we are doing pretty good and not having much problem with the typical MS symptoms.

It could also mean that our treatment  is not slowing the progression and we feel like the wrong disease is being treated.

That would probably rank up there as the most frequently asked question by all of us.  Call it wishful thinking, perhaps.

best, Lulu

[supermum_ms]

Jemm,

I dont actually remember you ever saying you have visual sx, which are double vision, ON, Nystagmus and there are other ones, lol i've forgotten. Anyway the lesion in your cerebellum will be throwing your propriception (where I am in space) out of whack, the visual and auditory still play there part and can make things worse. The level of noise and visual stimulation your eyes are taking in at the mall or the like, can over stimulate your brain or simply distract your brain which is all a bit too much. Have a look at what Bob told us.

I find for me, my balance issues are not from my eye sight (double and Nystagmus) because thats all the time and not 'significantly' worse during relapses. Though my balance is totally off the planet during a relapse, not perfect when i'm recovering but the difference really stands out so it can't only be from my sight issues. I think you may find that being in the chair is giving you not only support for your dwindling energy level but also providing your brain with enough physical clues to exactly where you are in space.

It might be time to get a scooter, check out ebay some are really cute and not really expensive.  

Cheers.........JJ

PS seriously gf why do you doubt your dx of MS, you were dx by the top MS specialists in our entire country, what bloody hope do all the others sods here have if this neurologist doesn't know what he's talking about?!