Balance

[dianeadelle]

For about 9 months now  I have  been struggling with my balance it started last dec when I was trying to walk across a parking lot and it felt like I was on a moving sidewalk or slippery but it wasn't  the feeling as come and gone until July when it changed to feeling like I was trying to walk on a small row boat that was in a river  when I close my eyes and try to stand on one foot I start to fall over.  I have been tested for vertigo and inner ear problems and they no to both now I have to have a MRI any ideas as to what is wrong with me.....

[dianeadelle]

Hope you have an ON balance day today!!!! At my salon waiting for my first client I have an app oct4 with a neurologist my MRI was normal that's good news but still feel the same so frustrated with everything had the vng test. It was normal.  Someone said Diane you may not get answers and you may have to just try to relieve the syptoms and learn to live with it  my doctor wants me to try a seasickness patch to see if that will help. I don't think  a lot about it but will try this weekend when I'm home   Again thanks for your thoughts....

[4happygnomes]

Me either...I've thought about taking up drinking to take my mind off all this stress, but the hangover wouldn't be worth it and I would still be left webble wobbling;-)   j/k  Thinking of you as you go about your day today!

[dianeadelle]

A sight for sure. People have looked at me  like what's wrong with you    Are you drunk.  (I dont drink ) and you high (don't do drugs). And then you try to give an answer. And for me they say. It's this it's that and I say no no. Been to the doctor and I'm still trying to find out. And they just look at me.  Makes me feel like I just want to stay home and hide from everyone expect my family and close friends

[4happygnomes]

I hear you, it's nice to know you are not "alone" with these symptoms/nightmare.  I've been dealing with this since May, when I initially fell without cause/reason...the other symptoms have come and gone  (and come again) but the balance issue is a constant.  Here is a link describing the VNG test and additional tests that I will have done.  

http://nationaldizzyandbalancecenter.com/services/balance-lab-testing/

http://vestibular.org/sites/default/files/page_files/Documents/Diagnostic%20Tests%20for%20Vestibular%20Disorders.pdf

I hope you can get some answers...it's very hard to be out in the world when you feel so unstable!

[4happygnomes]

YES essdipity, that is the test I had done (VNG) and I was actually somewhat relieved that they found something to validate what I was saying...although, now what??  What is causing it and can it be fixed...million $$  question!    I also only have problems  when walking..no problem driving/sitting/laying down although walking on uneven terrain (hill/grass) is easier for me than flat surfaces.  I first thought "drop foot" meant that you dragged your foot, but have recently read that it can also be described as "parrot walking" where you lift your foot up higher than normal to clear the ground....that is what I do.  I'm quite the sight!  =0

[essdipity]

I made my post about mal de debarquement because my latest neuro, who was schooled and trained in Ireland, nodded understandingly and readily called it that when I described it. To all previous neuros (and there have been maybe 6) I just said that I feel as if I'm trying to walk in a bobbing boat in choppy waters. None of those put a name to it, but they too seemed familiar with it in the context of MS.

I was given thorough vestibular testing, including a VNG. Can't remember the details as that was quite a few years ago, but I do recall that it had me moving my head and possibly looking at a screen(?) as puffs of air were blown into my ears, and water too, I think.

The idea was to determine whether or not the problem was central (the brain). For me the answer was rather inconclusive--it was possibly from the brain. Pretty common for me, and maddening in those pre-diagnosed days, to get ambiguous results. But at least it did demonstrate with certainty that there WAS a problem. So no one could say it was anxiety or some such. Ultimately the weight of all the evidence, including MRIs, got me the diagnosis of MS.

I do want to emphasize that if all other testing is normal, a person with this complaint should really look into mal de debarquement as a standalone disorder and pursue whatever treatment or symptom relief is available in those circumstances.

Just one additional comment. When I'm having a 'spell' of this, it happens only when I'm walking or trying to walk. When I'm sitting or lying, no problem. At no time, though, can I walk on rough terrain or even grassy areas unless they're really flat and smooth. Otherwise I'll lose my balance for sure.

ess

[supermum_ms]

I was really interested in understanding if "mal de debarquement" is actually connect to MS or not, what i learnt.........

Mal de debarquement (MDD)
It's more common in middle age women (87% mid 40's)
More often dx in women 'after' they've been on a cruise
Thought to be related to migraine or hormone imbalance - unconfirmed
Very little research done so they don't exactly know what causes it yet
Audio testing, MRI's etc typically don't find anything abnormal
Relieved with movement eg riding or driving in a car
Like vestibule disorders it may include motion sickness but less common
Difficult to dx - often misdx as vertigo or vertigo misdx as MDD
Accepted theory that it is not caused by damage to the ear or brain
Possible variant of motion sickness - motion sickness meds often work
Medication and therapy treatments are available
Can last months to years

I read quite a few things but this is the latest i think......http://www.dizziness-and-balance.com/disorders/central/mdd.html

I got to say it's all quite interesting and often very similar to what we talk about, though usually it's been identified as 'vertigo' lol i wonder how many of us actually went on a cruise and get relief with motion though, doesn't ring any bells.......  

Cheers.........JJ

[immisceo]

For most people with MS, their MRI will show evidence. This is not true for 100% however. A lot depends on the machine strength, the software employed, and the location of the lesions. A negative MRI may lead to a longer diagnostic process (as it hasn't pointed to anything specifically), but it does not in itself rule MS out conclusively.

[dianeadelle]

Question my MRI they say is normal but I'm reading that it can test normal and you can still have MS. Any thoughts or information ?

[dianeadelle]

This might how crazy but it's so nice to talk to someone who knows how you feel. I had to finally add a cane to use and it does help but sometime if it's a really bad day it's not enough.  I hang on to my daughter and grandsons some of the time but working is hard. I'm a long time hairdresser and have had the same cilients for many years and everyone is offering me a arm to hang on to. Thanks goodness and room isn't spinning or I couldn't work  the swaying feeling seems to start to get worse as the day goes on.  My MRI test was normal but they didn't test the spinal cord going to see a Neuro doc next I would like the link about more tests.     Tests tests and more tests never been one to be sick or run to the doctors for help  how long have you been having trouble ?  Would like to know more. Thanks

[4happygnomes]

I am still in limbo and haven't yet been diagnosed with anything but balance is one of my biggest issues.  In fact, when my eyes are closed I visibly sway,  primarily to the left, but really all directions, so I can relate to what you are experiencing!  It is very unsettling and has kept me from going out where there isn't something to hold onto ( shopping cart/husband's hand, etc).  I was just recently referred to a balance and dizzy center where they have done 1 of 3 assessments...these are more indepth than what an ENT can determine or a GP... and it has been determined that I have a 25% deficit in my left ear (vestibular, not hearing)...it was pretty remarkable what she was able to find based on just that one test.  She can't tell me what has caused it, but at least there is "proof" that something is going on so my Neuro has "fact" to go off of (so many of symptoms are invisible to others)  I can attach a link describing the tests she has done/will do if you are interested in pursuing something like that?  

[dianeadelle]

Just got  home from my MRI  waiting game starts now!!  I'm afraid they will find something bad and also afraid they won't and then what..... It's in gods hands now

[dianeadelle]

Thanks I talk to my doctor today and will ask him

[doublevision1]

Ess: so that is what it's called? Wow I never knew that. I have that, and I don't think I've mentioned it to a dr in years as it's mild compared to my other symptoms. Like you, it's always in the background for me, especially tending to show itself when I'm jet lagged and/or overheated. Thanks for that info, good to know it has a name! :)

[doublevision1]

Do you know whether your MRI will be just of your brain, or also your cervical and thoracic spinal cord?
Will a contrast agent be used (to detect enhancing/ active lesions)?
Will the radiologist be following the MRI protocol for MS?

These are good things to understand beforehand.

Hopefully you will have some answers soon. The waiting can be the most difficult part.

[dianeadelle]

Thank you I see my Doctor tomorrow to talk about the MRI  just writing on this site has helped me feel not so alone. MS keeps coming up as a possible answer. Will post when I know more

[essdipity]

Hey there, you're not alone!
,
The sensation you describe is called mal de debarquement. There doesn't seem to be a simple English equivalent, but it just means the unbalanced feeling some people get when getting off a ship, especially when they've been aboard a long time and have gotten accustomed to the rocking and pitching of the ship. Experiencing it on land is very strange, I know.

This is one of the first symptoms of MS that I had, and over the years I've gone thru  5 or 6 bouts of it, each lasting several months at least. In fact, I pretty much always have it as a background thing, meaning I lurch a bit here and there, etc.

You should know, though, that mal de debarquement can also be a standalone disorder, unrelated to MS. I believe people with that have much worse symptoms than I have, and it must be terrible. Try googling, using that name. I once came across a group or society just for those people, online, of course, but they may even have 'in person' conferences and so on. Although this is far from a well-known problem, some doctors acknowledge it and take it very seriously.

For me, it's just a part of my MS, with lots of other fun things happening as well.

Good luck to you, and let us know what you find out.

ess

[dianeadelle]

Thanks for your comments. I haven't been offered any kind of treatment yet.  This is the first time I have ever written on any web site.  I have been just reading what people are writing about themselves. And I thought it couldn't hurt to write about myself and see if anyone out there feels like me. I feel very alone with how if am feeling and when I see someone else having kinda the same problems it's not so scary....

[immisceo]

We're just patients here, not doctors. It sounds like your medical team is proceeding in a responsible manner by checking out (and ruling out) the most likely causes and moving to further testing based on those negative results. The time it takes to get to the bottom of things is frustrating to many of us, but many medical answers aren't obtained quickly, unfortunately.

Have your doctors offered any symptomatic treatment to make you more comfortable while they continue testing? What you're going through does not sound easy at all. I hope your MRI is able to provide some answers!