OFF BALANCE..ANYONE HAVE THIS?

[starryeyes1]

Hi! I am recently dx since July 2009 and my first real symptom was balance problem. When I walked I would list to the left. Many MRI's and a few neuro's later, an MS Specialist dx me. I have friends w/ MS and they talked about steroids helping them. My neuro says it wouldn't help me because the lesions are older. One of them is on the "Pons" which affects walking. I go to PT but am not able to work now for fear of falling. Does anyone else have this problem? I feel completely alone.

"walking like I'm drunk"

[starryeyes1]

I am under  the impression that this is how it will be. I do PT and they do all sorts of exercises to work on "retraining" my brain. I cannot say whether I feel it's helping or not. I wish it would go away even momentarily but I am about 2 yrs with having this. What helped you when you had the dizziness? Steroids won't work due to the lesion being old. My neuro keeps telling me its because of where my lesions are (which *****).

[Ufrustrated2]

that was one of the first episodes i too, balance problems, had back in 1986. can still remember walking very close to the walls at the navy hospital for support. and too at that time, the loss of taste and  sensory issues.

still get that from time to time. crowded places and such affect me too, but i don't know why.

[sdsam]

My most recent episode started with double vision, with the images horizontally displaced.  The next morning I woke up with the images veritically displaced and balance and equilibrium issues.  Docs noticed that I was falling over backwards when I attempted to stand.  Sent home after three days in the hospital doing another LP and a three bag regimen of steroids.  That was 5 weeks ago, and I am still using a cane to steady myself when outside, but getting around the house pretty good.  Had issues with vertigo about 4 years ago that would just come and go, Doc said it was due to damage done during a demylenating episode in 92.

[Wobbly]

one of my first symptoms other then Vertigo...and I still have this problems most days...not always though..

take care
wobbly
dx

[tarter]

To Starryeyes1

I am reading your post and you are describing my symtoms the walking to the left and tongue thing, Do you bit yours when eating?

The walking drunk thing is embarrasing because sometimes people are staring at the way i am walking and when i stutter they are convinced that i am drunk  or have had a stroke.

Havent been diagnosied yet awaiting second scan results.

take care tarter

[starryeyes1]

I am sorry to hear about no dx yet. It is the not knowing that is so frustrating. I hope the ins thing gets straightened out.

I have a jetted tub with a shower inside so when I get in I have to step down pretty far to shower or bathe. It is soo not safe> I hold onto the door handle to keep from falling. If I put my head up or down I become very dizzy.

My MRI showed no lesions on the spine. Evidently the lesion is directly on some part that controls balance. My tongue also goes numb on the left side every so often. Weird.. I am also not the "norm" for nerve pain. Its not in my legs, its in the right side of my armpit and  chest. Sometimes it hurts all the way up to my ear. I don't know..

My dad has MS and is in a wheelchair now. He has had it for about 30 yrs. I guess maybe thats why I got it?? I have 5 other sisters who are totally fine tho.  Well thank you for the input. I hope you get some answers soon. Take care!

[PastorDan]

Not sure about the relationship between the brainstem and the pons; it could be that the pons is part of the brainstem.  They are certainly near each other.  Bet Wikipedia would be a halfway decent refresher.

Ditto to all of the above symptoms, especially jens' description of what happens when we close our eyes.  I also suspect a spinal lesion, but who knows?  I'm still a limbolander, and since I am at least switching insurance plans if not losing coverage for a slight spell in the transition, I am likely to remain in limbo for a while.

I have noticed one interesting phenomenon.  I now have a much smaller shower stall than at my old place, where there was a shower in the tub.  I find that I fall less in the shower now, and I think it's because the nearness of the walls allows me to sense that they are there via sounds reflecting off them and to my ears.  Kinda like sonar, I suppose, without the beeps.  When I was standing in a big tub with a flexible shower curtain, the sounds were too muted and distant.  Lathering and rinsing my hair and the rest of my head requires closing the eyes, period.  Used to be that would leave me swaying, and more than once I fell through the shower curtain onto the bathroom floor -- which was carpeted, fortunately.  Now I'm surrounded with tempered glass and fiberglas, and as big as I am, there's never much space between any of them and some part of me, thus I can always "hear" where the walls are in relation to my body, and I can always reach out to stabilize myself with a pretty good idea of in which directions it is safe to reach.

[starryeyes1]

Yes, crowded places or narrow walkways are super hard for me. I feel like other people with MS gradually got worse but I was worse from the start. This lesion on the pons is also the brain stem?

[HVAC]

I have this issue. I trained a service dog to guard my left side so I do not have to make sudden movements causing me to fall. I tell people my gyroscope is broken. If I am in a store or crowd and have to process a lot of visual information to maneuver, forget it.

Alex

[jensequitur]

Oh, yeah...  You're certainly not alone - I think many here have balance problems.  They come from a variety of sources.  

Mine is most likely from the cerebellar lesion, although I think I have a spinal lesion which is contributing.  I have no sense of which way is up with my eyes closed - I just fall over.  For a long time I couldn't walk down a hallway without touching one wall to keep me straight.  It's only been this year that I felt really stable, and that's without being in a flare.