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.
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.
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.
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.
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.
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.
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...
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?
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
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.
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.
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
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.
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.
I was diagnosed with ms 10 years and have managed with it pretty good. About 5 months I started with lightheaded dizzy fainting feeling I have been through every test and it always comes back normal. I never have a normal day and have had my world turned upside down. I can't leave the house by myself and am so frustrated. If anyone has any ideas on medications or therapy I would so appreciate it. Ty Yvonne Wiebe Winnipeg Canada
I suffer from dizziness a lot & other times it's Vertigo. I originally had this go on for 10 months straight & I became very limited with what I could do in life other than sitting or laying at home.
Then it started to settle & I didn't have it everyday now but I do now get it when I get overheated, stressed, tired & just randomly. I know that I have to live with this & haven't been offered much from any doctor other than "Prochlorperazine maleate" which helps the brain deal with dizziness rather than the stomach but these tablets can easily cause other problems so nobody really wants me to take them unless it's really bad.
I was told as I have a lesion in the Pons area of the brain stem that this is the probable cause. I hate this symptom more than any because of the nausea that I also get with it. I can only hope that someone else chimes in with an answer & then we can both have a solution to this awful problem. Karry.
I feel for all of you. Last year I was hit with extreme vertigo on a Sunday and went to the ER--my husband was away and I couldn't possibly drive. I was desperate enough to have my unlicensed daughter drive me there. When I couldn't stand when they called me--could barely keep it together crouching over--they rushed me in for an EKG as I they thought I was having a heart attack. They gave me a Meclizine, which helped but I spent the next two days in bed. It turned out to be a virus. The ENT I saw later explained that Meclizine cannot be taken for very long because it interferes with the body's ability to right the balance. This was the most profoundly unpleasant feeling I have ever had; experiencing this for more than a few days would seem nearly unendurable.
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