Do I have MAV or MS?

Specific Illnesses & Conditions VM/MAV
1

Hi eveyone,
I’m a 33 year old male and my dizziness started a year ago in March 2013 and it’s been almost constant since. The months of September 2013 and January 2014 have been almost completely symptom free but usually I feel something is wrong on a daily basis.

My dizziness is a feeling of unsteadiness, of rocking like on a boat or like if I had too much alcohol to drink. When I walk it is usually worst. I’ve never had rotating vertigo nor have I ever had a migraine but I do have a couple headaches every month which are a 4/10 on a pain scale. Usually Ibuprofen helps.

I went for an MRI and I have 3 lesions (See http://i44.tinypic.com/2hdnvrd.jpg). I did a visual evoked potential (VEP) which was abnormal, P100 latency was 156ms in both eyes (it should be around 100ms). The auditory evoked potential and somatosensory evoked potential were normal thank goodness! This summer I’ll go for a 2nd MRI to see if the lesions have changed and there are any in the spine. I’m also doing a lumbar puncture in a few months then I’ll have done pretty much all the tests that exist! Those abnormal results could be explained by MAV, MS, Lyme and a bunch of different conditions. Since I’m such a lucky person, my electromyogram (EMG) test showed I had mild carpal tunnel syndrome but that’s probably unrelated to the rest.

As you can imagine I’ve seen a whole bunch of specialist doctors and no one gave me a diagnostic for MS, MAV or anything else so I’m just in limbo waiting until my symptoms change. I’ve had some minor muscle weakness and tingling but it only lasted a couple hours. I’ve never had numbness, blurred or double vision which are typical of multiple sclerosis (MS). My main symptom is dizziness.

Three years ago I started having tinnitus in both ears and 6 months ago I started seeing floaters in my eyes. I have blue field entoptic phenomenon and occasional mild afterimage but I’ve never had an aura. I have no idea if these could be related.

Since my problems started, I’m becoming more anxious even though have a great life which is pretty stress-free. Sometimes I’ll have a feeling of food lodge in the throat for a couple hours or the entire day. I’ll have random muscles fasciculations (twitch) for a couple seconds maybe 20-30 times a day (legs, arms, butt, face…). Once a week I’ll feel anxiety is becoming too much so I’ll take a Lorazepam which almost always helps. Sometimes I feel like I’m going crazy… :frowning:

I think I’d rather have MAV than MS but Lyme would be my first choice as usually, a month of antibiotics is all that’s needed but that test came out clear.

I’d be curious to hear if anyone has had a similar experience or if you have any comment. :wink: Thanks for reading!

Cheers,
Richard

2

Hi Richard,

With the lesions and abnormal VEP you will probably get a diagnosis if the LP is abnormal too. Sorry you are stuck in limbo for the time being, but that’s not at all unusual. Lots of people wait many years for an MS diagnosis. One problem is that MRI brain lesions can be due to many things (including migraine) and unless they are in typical locations, shapes, and/or sizes for MS, they can be interpreted differently. It sounds like your doctor(s) suspect yours of being MS, however.

Your experience of running around to different doctors and getting no firm diagnosis is frustrating but for sure not unusual. I did that for years starting in 1999… and I STILL have no diagnosis of ANYTHING, although I diagnosed MYSELF with MAV. (Neurologists didn’t think so but had no other explanation for my dizziness.) Never had VEP but I have very abnormal auditory evoked potentials.

I was never able to get an LP to clinch the question one way or the other–two tries (in 10 years) but no spinal fluid! I am determined to make one last try. Very soon.

Good luck to you. I hope you get a diagnosis soon so you’ll know what you’re dealing with.

Nancy

3

Hi Nancy and thanks for your response,

I forgot to mention I already got 2 different MRIs of the brain at 6 month interval and both are exactly the same, the white matter lesions have not changed which is good news.

Abnormal MRI & VEP for migraines are not uncommon but do also point to multiple sclerosis which is why it’s important to do a follow up MRI and a spinal tap. If my 3rd MRI and spinal tap are clear, than most likely I do not have MS. I’m crossing my fingers!

With MS, the degree of disability a person experiences five years after the onset on their MS is, on average, about three-quarters of the expected disability at 10-15 years. (patient.co.uk/health/multipl … is-leaflet). After one year, I have zero disability.

Study on VEP and migraines conclude: “Measurement of Visual Evoked Potential (VEP) latency and amplitude is a valuable and reliable test for the diagnosis of migraine. Our results reflect a persisting dysfunction of precortical visual processing which might be relevant in the pathogenesis of migraine.” (ncbi.nlm.nih.gov/m/pubmed/21061777/)

Study on lesions found on MRI and migraines: “Twenty-seven (26.4%) migraine patients and six (6.3%) healthy subjects in the control group showed focal regions of increased intensity signal within cerebral white matter. White matter lesions in migraine patients are fairly common.” (ncbi.nlm.nih.gov/pubmed/17116221)

Because of the total lack of neurological symptoms, my neurologist does NOT believe it is MS. If it is MS then it’s a VERY mild form of the disease. Symptom-wise, I have trouble relating to people with MS but I can totally relate to the stories I’ve read on this forum about MAV; the chronic dizziness and dysequilibrium, visual “snow”, anxiety, etc…

I’m sure a lot of people have read this article about MAV. I find it quite reassuring (in my case): dailymail.co.uk/health/artic … dache.html

I’ll update this thread as soon as I get my test results. It might help some other sufferers in the future.

Most important, STAY POSITIVE and TAKE CARE OF YOUR BODY! I’ve started doing yoga twice a week and occasional meditation, also, I exercise as much as I can and eat healthy foods (although not always easy!). Medical breakthroughs happen all the time and we are very close to being able to help the brain repair itself (youtu.be/0FQXicAGy5U)!

Thanks to all!
Richard

4

Hi Richard. Thanks for all the links and everything.

Besides the MRI, the other main thing neurologists look at is your physical exam. If they find exaggerated or unequal reflexes in addition to brain lesions, you are very suspect.

I have three red-flag SYMPTOMS of MS, all remaining unexplained after many years, as well as several other problems, but I have no reflexes except in my arms (the opposite of expected in MS) and my brain lesions are not of the right shape and location for MS (even though they looked a lot bigger than I thought when the neuro showed them to me yesterday). Thus I am in the “not MS” category, he says. So, no spinal tap. The symptoms the patient can feel (in my case, “Lhermitte’s-like” symptoms, a history of widespread paresthesias, bilateral trigeminal-nerve symptoms, “underreaching” for things all one summer, etc., not to mention the longtime dizziness) do not mean ANYTHING when it comes to diagnosis, only test results.

The neuro did an EMG and nerve-conduction test yesterday and also found mild carpal tunnel in my right hand, which surprised me, as I have no symptoms of it. Also a “mild sensory neuropathy” in my feet, accounting for the lack of vibration sense.

Your other symptoms (tinnitus, twitching, floaters, anxiety, etc.) will be of little or no interest to a neurologist. You probably found that out already. :slight_smile: There are certain criteria for diagnosing MS, but really the MAIN thing doctors care about is your MRI.

At least the neurologist I just saw was a good one, who worked off the actual facts (what a concept!) and didn’t make irrelevant, dismissive, and unexplained contradictory remarks, as too many other doctors did in the past. If every doctor could be like him, how much trouble and turmoil that would save patients! I hope you have a good doctor, too.

Best of luck and let us know your results when you finish your testing.

Nancy