Multiple sclerosis?

Hi all,

How do we know some of us aren’t dealing with MS here? I heard that MS is extremely hard to diagnose and symptoms can vary with everyone. I was told at U of M that I didn’t have MS. But sometimes I’m not convinced. I rarely get the headaches and when I do they’re not severe ever. I’m constantly dizzy/off balance, some day’s worse than others. One time a few years back (before I was dizzy) I had a bout of tingling and a burning sensation on my wrist that was there for about 2 weeks then went away and I haven’t had it since. Every now and again I’ll get this scorching burning on a very small part about an inch in diameter on my stomach that lasts for a few seconds than goes away. It’s always in the same spot too. That doesn’t happen a whole lot, only sometimes.

Please tell me some of you have gotten some tingling or numbness at times in the past and are positive you have migraine and not MS.

Right now, if I walk in an area that brings me some serious dizziness for a second, my right foot starts tingling right at the same time the dizziness sets. Exactly at the same time. That’s why I’m getting scared that I could maybe have some early MS going on here. I’m not freaking out but I’m getting a little worried.

I do get the headache around the right temple which I think that’s common in MS too but probably more in migraine I imagine. Does anyone here know how to tell the difference between Migraine and MS?

Also, I am scheduled tommarow for an MRI for a small brain aneurysm they found last year when I was at the hospital (which has nothing to do with any of my problems by the way), I’m going to ask my neurosurgeon when I see him right after about the possibility of MS. He’s probably going to tell me to talk to a neurologist but maybe not. Whatever, he’s getting asked anyway.


Hello Greg

Yes, it’s a worry isn’t it? Before I was diagnosed with MAV I imagined I had all sorts of scary things, MS included. I had an MRI scan pretty early on that apparently ruled that out. I say apparently because I have no idea if an MRI can be that definitive regarding an MS diagosis. I just presumed so because at the time the doctors who perforned it seemed so certain that MS was riuled out. I can still remember my relief.

I have no doubts I have MAV, having been diagnosed at two different hospitals, years apart. But I do get the tingling and numbness too - in my fingers, my legs. All random with no pattern whatsoever - it comes and goes with a will of it’s own.

I have a friend of my own age who has MS and at times her symptoms sound very much like my own, so I understand where the worry comes from. The right temple headache BTW can definitely be migraine - I get that.

Wouldn’t the MRI you are having show up signs of MS (presuming such signs show up on scans). I’d definitely mention it beforehand, kill two birds with one stone. Perhaps someone knows for sure about all this stuff and will answer nore definitively than I can.

Good luck for tomorrow, Try not to worry yourself too much.


I had some facial tingling Tuesday while my legs were being manipulated by a PT. Pretty certain I have no MS: I’v had lots of tests by lots of specialists over the years.

Omg thats one of my huge fears too, or ALS bc my dad had that. Ms Is what my neurologist wanted to rule out first, and had MRI and evoked potential and he said I don’t have it. I still think about it though, especially when I get twitches and muscle spasms, freaks me out:( the only thing that comforts me is knowing that if I have it, I have it, nothing I can do about it and it will show up eventually. The good news is that there are a lot of treatments and most folk with it go on to live a long life. With that said I don’t think you do, just what goes through my mind when I think I could. I also don’t think with ms its a 24/7 thing, it’s usually episodes.

I think they look at your mri for “white matter lesions” or something to that effect. I wouldn’t worry too much about it. Migraine causes such a plethora of symptoms, and nerve issues are def some of them. The sensory amplification for most of us is huge…but yes, I have heard of many people getting tingling. Some of the meds, Topamax in particular, causes tingling in the extremeties as a side effect. So I’d say don’t worry, cross that bridge if and when you get to it…we have enough to worry about!

I actually was checking out some of the MS forums just to see what they go through, and I have to say that I doubt very much now that I have MS. Some of these poor people are an absolute wreck. I mean, I think we have it bad at times, which we do, but I saw some pretty severe symptoms with some of the posts. Things like people can’t feel there legs at all or back pain that just doesn’t let up. I mean our main problem here seems to be dizziness which sucks. The main MS complaints seem to be a lot of swallowing diffuculties and just many other symptoms similar to ours but maybe magnified quite a bit. Like there complaints of dizziness, but those dizziness complaints are a lot of people who just can’t feel there feet or very painful burning in there feet and legs that naturally would affect there balance. Some pretty horendus stuff I saw. Actually made me feel glad that I’m a member here and not there. I feel for those people, that’s gotta be tough.


you’re right, I have plenty to worry about here. No sense bringing that type of worry into my life. I worry enough as it is. The doctors said I didn’t have it and they were pretty certain so I gotta believe them. Especially after looking at the MS forums I have to agree with them. I mean I got some tingling going on, but nothing like that. Mines not debilitating, just annoying.


I used to fear all the worst. That was before I found relief from meds and now I know that it is migraine for me and nothing more. I used to have bad tingling in my back and when I had bloodwork when my MAV started, found that my vitamin D levels were very low, 9 to be exact when it should be above 32. I had to mega-dose to get it back up to where it should be and I now take 1-2,000 mg a day.

Just a thought, but are your vitamin D levels low? That can cause tingling, as can low vitamin B-6 or B-12 levels I was also told.

I think a really good book that will help is Heal Your Headache by Dr. David Buchholz. He explains ALL the tingling SX as well as so much more. One on my Migraine symptoms is tingling in various place on the face and scalp, so This book along with MRI etc really helped ease my fears and concerns.
Good Luck and hang in there


Well, I also thought it could be MS, but the first symptom of that is usually a visual disturbance, and it usually occurs in the 20s or early 30s. If your MRI is clear (meaning no white lesions) and your only symptom is vertigo, then you don’t likely have MS.

I also thought I had lyme disease, B12 deficiency, epilepsy, and so on and so on – the doctors even tested me for syphilis and other wacky theories. Finally they said my brain was having trouble re-setting, and gave me Celexa (now Lexapro) and it seems to be working.

Many of us go immediately to the worst possible conclusion instead of the obvious answer. I know that I do this all the time. I get a thing on my skin and I think it must be skin cancer. I had a mole on my back removed and it was ‘ABCD’ – all four markers of skin cancer: Asymmetrical, irregular Borders, dis-Colored, wide Diameter. It came back as nothing.

My first very, very serious extended bout of MAV happened/triggered/was triggered by a confirmed case of optic neuritis. I was 31. Everything about that scenario screamed MS (Google optic neuritis and see what happens). The happy news is that my MRI back then was clear. At that time I was then actually (correctly) diagnosed with chronic migraine, I just didn’t believe it. About three years ago when MAV symptoms were ramping up again I was referred to Prof Halmagyi. Given my history he actually cautioned against me getting an MRI due to the high likelihood that I would have MS (as someone who has had optic neuritis I’m 25-80% likely, depending on which studies you read, to go on to develop MS) and he reckoned the implications for work, insurance etc were so great that it was kind of better not to know. By that stage I was desperate to know if I did indeed have MS, or not. For me, ignorance is not bliss. Anyway, the happy news again was that my MRI was STILL clear. So now I don’t worry about MS anymore.

As for the MS-like symptoms - numbness, tingling and the like. Yes - I get them all!

The only other thing to note is that in rare cases migraine activity can actually cause white lesions on the brain - which look similar to those caused by the de-mylenation of MS. There’s actually someone on this forum (I forget who, sorry) who WAS diagnosed with MS years ago based on lesions showing up on her MRI and it turns out she doesn’t have it at all. It’s migraine.

— Begin quote from “Victoria”

There’s actually someone on this forum (I forget who, sorry) who WAS diagnosed with MS years ago based on lesions showing up on her MRI and it turns out she doesn’t have it at all. It’s migraine.

— End quote

she’s not on the forum but my mum had this experience - took 10 years to get “undiagnosed”

My last MRI did show many tiny white lesions but the neuro said that the migraine brain white lesions do show up differnently than the MS lesions… I didn’t really dig further into this since I wasn’t really worried about MS. The tiny white lesions are actually quite common for migrainers who have had multiple auras - which I have had over my lifetime - he actually warned me that we would likely see this given my age (46), they type of aura I have - (full blown affecting all the categories - vision, numbness, speech aphasia and confusion/disorientation - I actually don’t get vertigo during an aura) and the number of auras I have had over the past 25 years…

I do now wonder what is different about these white lesions than the MS lesions - size? They were like tiny little dotted areas in various parts of the brain…


I also had an MRI with negative results for MS. Of course that was my worst fear and my Dr.'s first. I get tingling of the feet sometimes as well.
Good luck!

Hi all,

Just had an MRI today and asked about any white lesions or anything, and my neurosurgeon said that he did not see any spots or lesions at all. Which is great I suppose. He said definatley no MS going on here. What a relief. Now if I can only make this dizziness stay away. It’s gotten a bit better since I got good news about my aneurysm and all, but I’m sure the dizzy’s will be back in full force sooner or later. What a pain in the ass. All this worrying about MS and stuff just to find out again that there is NOTHING wrong with me that they can see. Man this dizziness really jacks with your mind doesn’t it.


It really does Greg! I have CONVINCED myself I’ve had 15 other (horrific) issues! This forum has been a lot of help though. MAV sucks plain and simple. I’m glad you are not worried about MS anymore. I was so certain I had it too until my MRI!

I’m the one that was diagnosed at Johns Hopkins and the Cleveland Clinic ten years ago with MS… I was treated for that condition for ten years… I had tingling, fatigue and unrelenting dysequilivrium… The most telling symptom at the time were “paraventricular white matter lesions” on my MRI… After many years, the criteria was changed a bit and more was learned about MAV…which is now my diagnosis!! So… It can defy itely mimic MS…but you probably have MAV as I do…


that must of been gut wrenching when they told you you had MS. Glad that you don’t and they say it’s MAV now. Have you been taking meds for your MAV, how are the symptoms now?


I have done a lot of reading about MS in the past 10 or more years, as in 2000 a neurologist (whom I’d gone to see for dizziness) basically told me I had it at my first appointment. Even though he knew that a year earlier I’d had an MRI that was (at the time) reported to be normal and a normal neurological exam.

He ordered a new MRI and then said, basically, that I DIDN’T have MS, or at least it was only a 5 percent possibility because only about 5 percent of people with MS don’t have brain lesions.

I found out LATER that BOTH of those MRIs were NOT “clean”–they did show small, scattered lesions. Those “tiny” lesions (often referred to as “punctate”) are quite infamous among people wondering whether they have MS–because they CAN be from MS but they can ALSO be from migraine, ischemia (tiny “strokes” due to high cholesterol, high blood pressure, and/or smoking), etc. So the doctors can’t really pin down the cause.

MS lesions TEND to be larger, appear in certain locations in the brain (such as periventricular areas, corpus callosum and I don’t know what all), and they tend to kind of oval, I think. However, a clear MRI, or a “nonspecific” one such as with those tiny scattered lesions, CANNOT definitively rule out MS. It’s rare but some people have MS with no lesions visible on MRI. Of course they do have lesions, but the MRI just can’t pick up the tiniest ones.

That said, doctors will usually tell a person they don’t have MS if their MRI only shows those small, nonspecific lesions. The exception would be (usually) if a person has a very clear CLINICAL case of MS, that is, highly typical problems such as certain problems with their reflexes, their eyes, etc. that just scream MS.

Tingling and twitching cut very little mustard for neurologists! No doubt because these symptoms are nonspecific, common, and can have many causes, including anxiety. People get them for no reason whatsoever–at least none that can be found. So neuros don’t worry about them.

To everyone here who’s been worried about MS, I would say, as long as you’ve seen a neurologist and they haven’t found anything suspicious for MS, don’t worry about it. The reason I worried about it for so long was because I DID have a lot of other weird things going on besides dizziness. I had a coordination problem, highly abnormal auditory evoked potentials (meaning damage to the acoustic nerve/brainstem) and other auditory testing was very abnormal, plus I had (and have had for 11 years) Lhermitte’s, odd sensations in my lower body when I bend my head down, which indicates damage to the cervical spinal cord and is very typical of MS. However, repeated MRIs have always shown only the “nonspecific” spots, and repeated neuro exams have not found abnormal reflexes.

A spinal tap is sometimes done when it’s unclear whether someone has MS, but in my case they were unable to withdraw any fluid despite multiple attempts even when guided by x-ray. Very disappointing.

MS can be easy to diagnose if it’s a classic case, but it can also be VERY, VERY frustrating and time-consuming, sometimes taking many years. This is because there is no one test to rule out or diagnose MS. It is a clinical diagnosis. A person can have no visible MRI lesions, a normal spinal tap, and still have MS. On the other hand, a person can have a brainful of MS-like lesions and yet have no symptoms whatsoever! In fact sometimes MS is discovered by accident when someone has an MRI for another reason, and MS is sometimes found in the brain at autopsy even though the person never had symptoms. Someone with very severe MS symptoms can have a clean MRI, while someone with a brain lit up like a Christmas tree can have only the mildest of symptoms.

I believe that if I did have MS, I would by now (11 years later) be having abnormal reflexes or some other big indication of it. But I don’t. I am having progressive trouble walking (cannot walk 2 blocks without stopping anymore) but that may be due to scoliosis. I do wonder about the Lhermitte’s and the abnormal AEPs, not to mention the widespread paresthesias, coordination problem and other things I’ve had over the years, but I know I am not going to get an answer. I had to diagnose myself with MAV to account for the dizziness, as doctors would just say it’s not this, it’s not that but they would lose interest in actually trying to diagnose whatever I DO have! And they never put any stock in my migraine questions–they don’t take it seriously when you don’t have the headache.

Well, that’s probably more than you wanted to know. :slight_smile:



Sounds like you’ve been all over the place with this junk. Have you tried a migraine preventative med? I’m guessing if you’ve had any success with migraine meds that would be a good indication that migraine is the culprate in your case. Although I wonder if the same meds used for migraine would also benefit someone with MS. Seems like they should anyway.


Hi Greg–no, I could never interest any doctor in my migraine theory, not even the big dizziness specialist-neurologist. The only time I tried something considered a migraine preventive was when I asked my PCP a few years ago (after I’d come to the MAV diagnosis on my own) if I could switch my blood-pressure medication from lisinopril to verapamil, if I had to be taking a BP med anyway. He said no, but he let me try atenolol. THAT caused me to be so fatigued I could hardly move, so I quit it after a week.

If my dizzy problems were more severe, you BET I’d be trying something else. I don’t think anything will get RID of my dizziness, and I’m worried about doing any messing with my neurotransmitters as long as things are going OK with just the B-2 now.

I DO take Strattera (atomoxetine, a norepinephrine reuptake inhibitor) and have been taking it for 7 years. It made all the difference in my ability to concentrate. I am so happy with Strattera. I only considered trying a different drug last summer when I was missing some work due to (what I believe were) MAV episodes. Now I’m just coasting along pretty happily. My problems have never been as severe as those of most people here. As long as I can concentrate well enough to read and work, I am pretty happy, and the Strattera does that for me.

Best of luck to you!