So i jave noticed in a lot of my research of MAV that MS keeps coming up as something that has a lot of the same symptoms. How do dr’s know that is not what it is? Im not asking a worrier i just legitimately want to know;)
I think they can tell if you have MS from your brain MRI.
Julie
Yes, brain lesions on the MRI.
Julie is right, they can absolutely see it on your MRI. Have you had one done. My Neuro said they don’t even have to do spinal taps to check anymore.
Make sure they use the gadolinium contrast if you get one. I think that way the lesions would show up better.
Julie
No one had mentioned ms. I jad a brain mri but its been a few years. Ive had many cts since but not another mri.
I also apologize for the typos! I am always typing on my phone!
Not just brain lesions guys!! I was diagnosed with MS for 10 years at two prominent US hospitals because of brain lesions… Johns Hopkins and Cleveland Clinic… I had brain lesions on my MRI scans and my main symptoms were debilitating lightheadedness, fatigue and vision problems. Also migraine headaches without pain… Last year my diagnosis was changed to MAV by these same institutions and also at Duke, so the criteria for the diagnosis of ms has changed and awareness of MAV has increased… Migraines can also cause these lesions… So get a second opinion… Always and maybe a third and know that research is always ongoing! Good luck in your search for answers and ask any additional questions you may have. There is a wealth of info on this site… Dee
Thanks dee! What made them change their diagnosis?
I might be wrong but I think it might be that the lesions caused by migraine may look a bit different to MS lesions. If you do a search for ‘lesions’ on the forum you’ll find a bunch of great posts about this topic, including references to information on Dr Hain’s website.
Vic
The brain MRI with contrast and with IAC protocol (Internal Auditory Canals) is pretty determinative of MS.
Also, the first sign of MS is usually related to vision, such as black spots in the field of vision. And most people (not all, but most) start to get MS symptoms in their 20s and early 30s, while a lot of us MAV-ers are older.
If the MRI is clean, and there is no optical problem, it is pretty much conclusive that you don’t have MS.
Just to confuse things a bit more…
I first started getting migraines in my early teens. When I was 31 (2002) I got optic neuritis. I lost the lower half of vision in my right eye (just blackness) and with my remaining vision I had significent visual loss - I forget the diopter reading but it was -36 or something. Over the following weeks the vision slowly came back, but with some minor, permanent optic nerve damage (which can’t be corrected).
Optic neuritis is highly associated with MS - both as an episode/attack of MS or as an indicator of likely MS in the future (something like 50% of people who have an episode of optic neuritis will develop MS within 15 years). So, at the time of my attack they were obviously investigating a possible diagnosis of MS because as well as the optic neuritis I fit the MS ‘profile’ with regards to age and sex. The happy news is my MRI back then was clear. As well as the visual loss I had horrific symptoms which are identical to subsequent chronic migraine episodes I’ve had, the ones where you feel like your entire body is shutting down, all the senses go haywire and you feel like you are dying. Various doctors at the time told me it was migraine, but I didn’t believe them. Now I do!
When I saw Dr Halmagyi in 2008 with yet another flare up of similar weird symptoms we discussed MS and getting another MRI. He obviously thought MS was a very real possibility and cautioned me about having a firm diagnosis due to all the ramifications that would have for work, insurance etc. At that point I said “I’d really just rather know - it’s been hanging over my head for a few years now”. So, another MRI and still no lesions! A few more years before I’m completely out of the woods though.
Some info on optic neuritis - medicinenet.com/optic_neuritis/article.htm
MS have all kinds of symtoms, so pretty much every neurologik symtom or paint/ace can be coused by MS. Thats what my friend (with MS) said when I was affraid off it.
I had an MR scan, and I had one leason, just were I always have the migraine headace!? The doktor said it didnt have a correlation, so its interresting for me to hear that migraine can course lessions.
If your MRI is normal, you probably dont have MS though this is NOT certain.
If it is abnormal, it could be many things, though certain patterns are more likely MS. But the list of diseases that causes MRI white matter changes is pages long.
MS is still a clinical diagnosis
What Dougie said.
A clear MRI rules out MS about 95 percent. They still sometimes do spinal taps in difficult-to-diagnose cases.
As mentioned in other posts, migraine can cause brain lesions that COULD be mistaken for MS or vice versa, but MS lesions often appear in specific spots or shapes.
It is NOT necessary to have contrast MRI when ruling out MS. Contrast will show which lesions are active (newer), but a non-contrast MRI will still see the lesions. Also, looking at the IAC (internal auditory canal) is not necessary for MS; it is necessary for ruling out acoustic neuroma.
I was once essentially told I had MS, but soon after they said I didn’t. I have some suspicious symptoms, but my neurological exams (where they test your reflexes, eye movements, etc.) have always been essentially normal, and they couldn’t get any spinal fluid out of me, so no explanations.
There are some specific diagnostic criteria for MS, which seem to be used rather arbitrarily. The neurologist has to prove damage to two or more places in your central nervous system over a period of time. Most neurologists won’t diagnose MS unless you also have typical MS brain lesions on MRI, or at least on your spinal cord.
Bottom line, if your brain MRI is not suspicious for MS (whether you have lesions or not) and you have seen a neurologist who performed a complete neuro exam on you in the office, and if you don’t have something highly suspicious for MS such as optic neuritis, you don’t need to worry about it.
Thank you! I appreciate this! Sometimes its hard to believe migraines can cause all of this! My MRI was several years ago but i have had thorough neuro exams and no problems with actual vision loss. I had an eye exam last week and was told my nerves abd optic nerve are perfect;) Not bad news. I just wish at times they would stop and say " oh, look! There is the reason you get dizzy! There is the reason you have disequillibrium!".
So glad i have this site!