Why dont some docs believe in MAV?

I have heard from a friend that her mom was being treated by a really good neurologist about 30 minutes away in Texas(Im in NM) I like my doctor, and the medicine he prescribed seems to be improving things slightly, but he doesnt know much about MAV, just knows migraines can cause dizziness. He did believe my dizziness was being caused by migraine, given my history with headaches, and migraines running in my family, so prescribed me medicine, but I would really like to find a doc who knows this stuff more. Anyway, back to the other doctor, I called to try and make an appt. (which there wasnt one till November) I told her I have already been diagnosed with MAV and does he know anything about that. She asked how long I have been dizzy for etc etc. She told me she would take a message and ask the doctor before I make an appt. She called me back right now saying, if I’m getting headaches with dizziness…umm no? She said the doctor believes that prolonged dizziness could not be caused by migraine, only things like multiple sclerosis :?

I think there are so many illnesses out there that can cause dizziness. MS is not the only one…and MS has other sypmtoms as well (more significant than dizziness). Your neurologist probably ruled out the big concern illnesses, and has now moved onto the dizzness. My neuro has not specifically ever said “you have MAV”. He said “I treat many people with dizziness, and here are the medicines that we can trial…” Remember MAV is a diagnosis of exclusion…all the other “serious” neurological illnesses have been ruled out. There are obviously doctors out there that deal with this more, and understand more about it, but no one can tell us why this happens. It is a poorly understood (physiologically). Thankfully we can be treated and hopefully move forward. Sounds to me like you are heading in the right direction!

I originally wondered if it was MS, but multiple docs told me this: If you have a clear MRI (no lesions) and none of the typical MS symptoms like optical spots/blackouts, and you are already beyond the age when MS first starts showing up (late 20s to early 30s), then the chance of it being MS are pretty small.

Well I am in my late 20’s (27) but my neuro asked me a whole list of questions when I first saw him and he said I showed no other signs of MS beside dizziness/vertigo, but he would do an MRI anyway. It has taken 3 weeks to get the ok from my insurance company so I am scheduled next week. I am a little nervous now that you say it shows up around my age…but I am responding to Nortriptyline. My neuro isnt worried about it all though, hence the reason he prescribed me meds before my MRI.

I’m a physician (I don’t really want to identify myself too much b/c I’ve fought with the state medical board over this - having to show that I’m not impaired). Anyway, I would say that most doctors have never heard of MAV. I was never taught about it and didn’t learn until it happened to me. When I tell my colleagues, they look pretty dubious, but I think they give it a thought. A good friend of mine who’d board certified in family practice assured me that her mom must have Menieres b/c it’s “too bad to be just migraine”. Her family has a strong history of migraine.
My neurologist saved my life b/c she recognizes MAV (she calls it vestibular migraine) and accepts how disabling it can be. Don’t put up with doctors who don’t believe you - find one who does.

Doctors know a lot, of course, but it’s sometimes astounding what they DON’T know. I guess when you’re the patient and you have something that you’ve learned quite a bit about, and found lots of other people with it and information sources about it, it seems shocking that your doctor has never heard of it, or doesn’t believe in it. And then there are the doctors, specialists even, who simply have their facts wrong.

I’ve experienced that over the last 12 years… from GPs who’d never heard of sudden hearing loss (and delayed my diagnosis for this otological emergency for a month), right up to the neurologist I saw most recently, who made some shockingly, patently wrong statements of very basic facts–knowing only “what I learned”, without considering whether maybe he learned it wrong to begin with! He didn’t care.

Good doctors will listen and learn, even if it takes a while. And they will double-check their basic facts when appropriate.

Nancy

— Begin quote from “longshort”

I originally wondered if it was MS, but multiple docs told me this: If you have a clear MRI (no lesions)

— End quote

and even if you have lesions it’s not necessarily reason to panic, as these can also be caused by migraine. I think there’s a paper posted here on that somewhere but I couldn’t find it

It was frustrating for me to get my MAV diagnosis too. My ENT told me i had “atypical meniere’s” and MAV wouldn’t cause prolonged lightheadedness. When I went to a neurologist and asked him about MAV, he told me it only happens to children. UHH what? How does that explain the 100’s of posts I’ve seen online about it?!

I finally got the diagnosis from my regular ol’ GP. He whipped out his iPhone, opened up an app, and read off every detail about MAV.

Could’ve saved myself hundreds of dollars, and countless hours if I just went to him to begin with.
But you live and you learn right?

— Begin quote from “lorcalon”

— Begin quote from “longshort”

I originally wondered if it was MS, but multiple docs told me this: If you have a clear MRI (no lesions)

— End quote

and even if you have lesions it’s not necessarily reason to panic, as these can also be caused by migraine. I think there’s a paper posted here on that somewhere but I couldn’t find it

— End quote

Wow this is interesting, and I would love to read it if anyone knows where to find it. Im wondering if many people are then misdiagnosed with ms when you have MAV?

— Begin quote from “Nancy W”

I guess when you’re the patient and you have something that you’ve learned quite a bit about, and found lots of other people with it and information sources about it, it seems shocking that your doctor has never heard of it, or doesn’t believe in it.

— End quote

I think this is it, I just wonder, how could I know more than you do about this? I guess like dizzymingo said though, she never heard of it till it happened to her. Hoping for a clear MRI on Tuesday or atleast a doctor who knows how to look over it right.

Rebecca: Lots of people will have tiny (“punctate”) white-matter lesions on the MRI, whose cause is difficult to identify.

Supposedly these little spots can be due to migraine, “small-vessel ischemic disease” (blood-vessel problems attributable to smoking, high blood pressure, cholesterol, aging, or what have you), maybe other things.

They CAN also be from MS, but I think most often are NOT. MS lesions tend to concentrate in specific spots and have a characteristic appearance.

Lots of people who are under suspicion for MS may get an MRI, have these spots show up, and be told that their MRI is “normal” or that the spots are not MS or probably are not. It depends on the whole clinical picture and other tests. You would NOT get a diagnosis of MS just on the basis of such little “spots.”

Dr. Hain’s MAV page has some info on the percentage of migraineurs who have these white-matter lesions.

I have a “multitude” (according to latest MRI) of these spots, but I assume they are due to migraine, not MS. Supposedly the overall pattern of them has not changed over time (even though a 2000 scan mentioned “one or two” lesions in “both hemispheres,” which was pretty fudgy, but far less than “a multitude,” so I think they’re multiplying). But you can never be sure–unless a follow-up MRI is done on the same machine with exactly the same software, positioning, interpretation, etc., you can’t tell whether they are the same spots or ones that just didn’t show up on the previous scan because the “slices” are a little different.

Bottom line, as Gabrielle said, do NOT panic if your MRI report comes back with these “punctate foci”, “tiny lesions,” or similar wording. It could certainly be from migraine and most likely would be. Also, don’t be surprised if your neuro tells you your MRI was normal and then later you get the report and it mentions such lesions. The doctors REALLY attach little or no significance to these lesions.

Good luck with the MRI and I hope it comes out clear. Remember, relax and lie very still and they’ll get the best pictures. Close your eyes and drift off to your favorite beach. (Even though the beach is complete with noisy banging, clanging, fire-alarm noises, etc. :slight_smile: Hopefully you’ll get a machine that will play CDs; some places even let you bring your own favorite CD.

Nancy

I don’t think we should be too hard on doctors who do not understand the full spectrum of migraine – especially the local GP. It simply isn’t taught to this degree in med school and you should move on if you are hitting a brick wall and find a doc who is more switched on. There is no excuse, however, for a neurologist who does not know this or understand all that migraine entails for some people. Specialists in such a field should be following the literature.

I don’t think there are many things that can cause intractable dizziness like we experience. Once the obvious main potential issues are ruled out such as tumours and MS, and there is no peripheral problem like BPPV or an unusually difficult case of uncompensated VN, you’re really only left with migraine and Mal de debarquement. And if there’s a history of headache to top it off or it’s in the family, to me it’s a no-brainer.

S

Thank you for all the info Nancy, I have never heard of people have tiny lesions who don’t have MS. Makes me feel a lot better just in case anything like that is found. I hope the MRI machine does play some music or something since they told me it will be about a 45 minute procedure.

Scott, yes I agree the local GP should not be expected to know stuff like this. I know my GP doesn’t which is why she refers. I just wish more neurologists knew how disabling this condition can be and that it indeed can cause prolonged dizziness - not just during the time of a headache.

This may be of interest:

[size=150]Migraine Linked to Brain Lesions[/size]
Damage Worse With More Frequent, More Severe Migraines

The findings may change the way we think about migraines, say study researchers Mark C. Kruit, MD, of Leiden University, Netherlands, and Lenore J. Launer, PhD, chief of the neuroepidemiology section at the U.S. National Institute on Aging.

“This is not just a headache we are talking about,” Launer tells WebMD. “These findings could change the basic way of seeing migraine from an episodic disorder to something that is more chronic – where something happens in your brain as a result of the attacks.”

“The findings of this study will change the common perception that migraine only is a ‘trivial problem’ with only transient symptoms, into [seeing] that migraine may be a chronic-progressive disorder that may cause permanent changes in the brain,” Kruit tells WebMD.

The findings, reported in the Jan. 28 issue of The Journal of the American Medical Association, don’t spell doom for people with migraines. But they do suggest that people who suffer severe headaches should see a doctor – and get effective treatment as soon as possible.

http://www.webmd.com/migraines-headaches/news/20040127/migraine-linked-to-brain-lesions

S

thanks scott