Dizziness 1 Year After 1st MS Attack

[Avery320]

I was diagnosed with MS last year when the right side of my body went numb. Since them the numbness has subsided. I was treated with 5days of IV steroids. However since going off the steroids I've become very dizzy at all times which keeps me from living a normal life. I've gone to multiple doctors but they can't seem to pin point it. Does this sound normal to anyone? It's gotten better over time but definitely still present.

[jensequitur]

It's one of the things that led to my diagnosis in 2007.  I would get extremely dizzy in the middle of the day, around 3:30 pm.  It kept getting worse, and then I started having numbness and tingling.  The dizziness took about 8 months to resolve.  For a while, it was a constant companion - I got REALLY tired of being dizzy.  Now it only appears when I'm fatigued or overheated.

[PastorDan]

I am undiagnosed; we still "have no idea" what's causing this, but my most debilitating and most nearly constant symptom has been very bad dizziness.  Sometimes I can't do much but lay on the floor with my face toward the ceiling.  This has been ongoing since October, but there was an earlier episode, in late June and early July, without as many other noticeable additional symptoms.  (Is that last phrase redundant?  I'm not sure.)  I'm noticing new symptoms all the time now.

Based on what I've read since I started researching MS in the past couple of months, I'd say no, Avery, your dizziness is not normal, but I'd also say that it is very common in MS patients.  MS is not "normal," in the broad sense of the world, but now that we've all learned about it, we think of it as normal for us or our loved one.  While dizziness might be quite frequent in people with diagnosed or suspected MS, there is probably no substantial dizziness that doesn't need to be professionally investigated in every patient except the one who just climbed out of a carnival ride.

What's most frustrating about this particular symptom is that it is not uncommon that no cause is ever found.  After checking every possible avenue, sometimes we have to live with the hard fact that even our best doctors can't always explain the cause of our problems (not without reading Genesis 3, at least), much less treat them.

[Fluffysmom]

From what I've read here and other places, dizziness does seem to be fairly common in MS.  I was reading about it today, as my vertigo hit yesterday while I was out shopping, with a friend, and I almost pulled some clothes off a rack trying to keep my balance.

I'm not diagnosed, but looking back after my symptoms hit hard this last February, I've had several episodes of dizziness over the years.  If I ever do get a diagnosis, I'll bet that my vertigo was the first symptom.

I saw an ENT a couple years ago about the dizziness, who really could tell me nothing.  He prescribed some really low-dose alprazolam, which did seem to help a little.  Several years ago, I tried several things, including some scopalamine patches.  I don't know if that episode of vertigo was over, or if the patches helped, but the dizziness let up.

Take it easy, make sure you don't fall, even if it takes using a cane to help steady yourself.  I hope you continue to get better.

Kathy

[PastorDan]

My cane has become indispensible.

[essdipity]

Yup, for many of us, dizziness is at least a semi-constant companion. Mine is back lately (3rd go-round), but it comes and goes, so is not as bad as it has been. Last time it felt as if I were walking in a rocking boat, for 5 months with no let-up. This time it's more of a swaying feeling, either the world or me, not sure. I keep doing these little side steps to regain balance, making me look more than a little drunk.

Time sure flies when we're havin' fun!

ess

[jensequitur]

Dan, you're right about how frustrating it is!  My neurologist had no help for me at all - just recommended an antihistamine, which I was taking already.  When I was feeling dizzy, it was more of a head-voom sort of thing - just a constant whee! as if I was drunk.

[Wobbly]

I have had Vertigo for the past three or four years...the past few months have been so bad...almost daily and non stop.. do you think it's got to do with the weather?  I don't know...I'm just so tired of spinnin...

tkae care everyone... and hang on

wobbly
undx

[Wobbly]

and I don't know if being on IV steriods for five day started it for you??  I have taken prednisone to stop my Vertigo which helped...but they don't want to give me more steriods to stop it anymore??

[Avery320]

Thanks all for your comments, it's extremely helpful to know I'm not alone in this. I find it hard to go to work sometimes and function normally at all due to the constant diziness. And similar to you Jen, its gotten slightly better over the past few months but definitely exacerbates when I'm fatigued.
Does anyone know of anything to help the symptoms or am I pretty much "stuck" with this forever?

[BOK2Bjan]

Dizziness covers a broad range of symptoms.  There's syncope which is feeling like you're light headed or ready to maybe pass out.  There's vertigo where you feel like the room is spinning. There are balance issues that make you suddenly not know what upright is - sort of veering off to one side or backward until you run into something or manage to right yourself.  I've had the first due to blood pressure dropping. But, now the MS is causing the latter.  I'll suddenly just whoooooooaaaa off I go to one side and kind of walk in an arc.  I've fallen backward, forward, run into furniture, walls, - talk about embarrassing.  My mother is having problems with vertigo due to age (in other words - they don't know) and I really feel for her when it happens.  I don't like what happens to me, of course.  But at least I'm not constantly "dizzy".  I really can't imagine how frustrating it must be.  I have many symptoms that are constant and I can sympathize with how difficult the constant aspect of it can be at least.  My prayers are with you that something can be figured out to make life easier.  Blessings, Jan

[Ella43]

Hi All,

I've had a very similar situation as well. My "dizziness" is not like vertigo, I can't really describe it except for saying its like I'm walking on clouds sometimes, or a big fog is in between myself and the rest of the world. It's not always there, but definitely at least once a day and brought on more when I get too much sleep or am over tired. The doctors have nothing really to offer as help. Like Avery I was on IV steroids as well for going numb, my dizzy symptoms didn't start until after the steroids were finished, but I'm pretty sure that's not what cause the constant dizzy sensation.

I wish you all the best

[PastorDan]

Mine started as vertigo, with a very strong sense that the room was spinning, and almost always clockwise for some reason.  However, it stopped doing that after a while, and is now a lot more like the balance problems Jan describes.  Unlike hers, though, mine is now pretty much constant.  Fortunately, I bought a cane before anyone else noticed that I needed one.  As a result, I've only actually fallen three times since this voyage began, and the most recent time was onto the bed.

[BOK2Bjan]

I've got a cane too! lol (A cute one) but I don't use it in the house.  That's when the acrobatics have occurred.  I may need a scooter soon - then I can run the cat and dogs down - not just the furniture!  Blessings, Jan

[PastorDan]

Wife just got her second scooter, by the grace of God and some very generous servants of His.  We'd be lost without it.  If you do find yourself shopping for one, consider whether you'd be trying to load it into your present vehicle to take with you.  The first one we saw was a dream to ride, but when we realized we'd need a van with a lift, we gave it more thought.

And don't forget to plug it in to charge overnight, every night.  I'll shorten a long story and simply say that it's a good thing the parking garage across from Gatlinburg's aquarium is downhill from the downtown shopping area.

[Melissa072]

I've had many ms symptons since June 2007 and even before then also.

I've had  24/7 dizziness since June 2007, and it worsens when I move head, its only very mild but there.

I've had 3 normal mri's without contrast on a 1.5 telsa and a negative L.P. in Jan 2008.

Today I still have the dizziness along with tingling, numbness, burning, twitching, weird feeling up arms and legs.

My head feels achy at time also, but the last few weeks my eardrums hurt and it feels like there is water in my ears, although I haven't been swimming.

I'm in a small mining town, and the nearest neuro is 12 hours away.

The dizziness would be my most annoying sympton, I can't go to the neuro here, he tells me my symptons are due to stress...............

Is there any meds that help with dizziness that I could ask my neuro next visit?

I am just about to give up, I am so sick and tired of having no answers.

I read Dr Kantors forum, and he says  with repeated clear mri's particulary on a 3 telsa and negative L.P. almost can rule ms out.

I have been checked for ms mimics, what else can I do?????????????

Melissa

[jensequitur]

Unfortunately, I haven't heard of anything that will help dizziness.  If it's not vestibular vertigo, then it's neurological, and you'll just have to hope that the brain heals up or finds a new pathway.

Melissa, without contrast, it's hard to say whether the MRIs are conclusive or not.  They really should have given you gadolinium contrast to check for new lesions.

[Melissa072]

I have asked all times about contrast and they tell me here in Australia their ms protocol is to have the mri done without contrast.............

Only when they see or find something then they will use contrast?????????????????

I have tried and tried to get the contrast.

My current neuro who has been working with ms patients for 20 years now doesn't use contrast at all.

I did get another neuro once to put with and without contrast, and I still didn't get the contrast....................

Maybe the ms protocol is different here in Australia then America and elsewhere???????