Thanks for all your opinions guys.See a year before my Diagnoses I had headaches all the time lasting days on end and I could't figure it out. See I was never a headache person before if I had 2 or maybe 3 headaches a year that was it for me. So I knew something wasn't right. I think there probably is a connection btw a lesion and pain, I'll guess I'll find out if I have more lesions( I hope Not) in May when I have my second brain MRI. Well, I'm off to work see ya'll later.

Just to clarify, and hopefully ease your mind a little between now and May, if there is a connection, I suspect it might not necessarily mean we have "new" lesions. Perhaps it's our old one's that are currently active/inflammed.

Cherie

WOW! Eye opener! I get sinus headaches often. But occasionally I do get this weird stabbing, nerve pain kind of thing right where one of my lesions is (periventricular area). I never related it to MS though.

I also never made the connection between back pain and the lesions. I just assumed I slept funny or my spasticity was acting up so much that it was causing back spasms. Now I'm thinking . . . .

I do know that migraine headaches can cause lesions; NOT MS lesions but lesions. I learned that at my 1st neuro appt years ago when it showed a few lesions. The neuro did tell me at that time all the causes of a lesion and although mine were similar to those of MS she could not say I had MS as at that time I showed no clinical symptoms of MS. I'll tell you, I left that appointment so relieved. (Of course, I was back there 3 years later getting a definite diagnosis.)

Heck, my brother through his neurological research has undergone many MRI's as a "test" subject. If I remember correctly, I believe he told me he has a lesion but that it was due to either migraines or a virus.

A friend of mine is a neurologist specializing in migraines. She said that they see many MS patients (not unusual for migraines to accompany MS) and also that there are definitely some MIGRAINE lesions that can resemble MS lesions and vice versa. She added that MS lesions tend to be "deeper in the white matter" but there are cases where it is also not so clear.

Thanks Cherie you know I never thought of it that way.

I really hate how different neuros say different things about lesion location. I have quite a few "deep white matter" lesions and my MS specialist says that isn't typical for MS. Your friend seems to be saying it is. Argh!

Holly, thanks for saying this -- I will ask her again to make sure I didn't mix up what she said!

Holly, I just heard back from my friend. Here is an excerpt from her email:

"Yes, you remember correctly. Typically, MS lesions are found deep in the subcortical white matter and around the ventricles, though there can be lesions elsewhere. In migraine, the lesions are often not as deep, though there are migraine patients who have MRI's that look like patients with MS (this is a minority of migraine patients). When I meet a patient who has migraine and has an MRI with multiple suspicious looking lesions, I usually either refer them to ensure nothing else is going on or repeat the study to ensure stability. There are other causes of deep white matter lesions. Hope that answers your question."

That is very interesting and I really appreciate you asking your friend.

I have one MRI report that states that my particular lesions are often seen in MS patients. I have another MRI report that says they are suspicious for demyelinating disease specifically MS, but to also consider Lyme and small vessel disease. Then there are the reports that just state that there are multiple lesions in the deep white matter.

I have had one neuro (my 1st neuro) flat out state that my lesions are no big deal - called them UBO's and said they could be caused by the migraines I don't have. Both MS specialists I have seen consider them to be demyelinating but the sticking point seems to be a lack of the periventricular ones. So, I kind of think your friend cleared up one thing for me when she mentioned that part.

It seems that I have one part of the puzzle. The neuros seem to be confused about the lesions appearing in the deep white matter before any evidence of the periventricular ones.

One of them said something one time to the effect that they usually appear in the periventricular area first because of the blood brain barrier issue. I'm sorry I can't seem to explain that better. I can't come up with the words today. It was just something along the lines of the area in closest proximity to the ventricles being more easily attacked???

The first neuro I had (UBO boy) was totally convinced I had MS until he saw the MRI results. Based on my neuro exam, he said he thought he would find my brain loaded with MS plaques. What he found was a bunch of smaller deeper lesions. I am pretty convinced that if I had periventricular lesions right from the start, I would have had a dx back in 2004. Luckily for me, he was still convinced something was really wrong and he sent me onto MS specialist #1.

My current dx is CNS Demyelinating Disease because my neuro won't quite call it MS because of my atypical lesions. He says it is "atypical MS" and treats me with IVSM (we used to do pulse IVSM before my bones started thinning) and treats my sx with the same types of meds as MS patients (i.e. Baclofen, Provigil, etc.) but isn't willing to use any of the DMD's or Tysabri on me because they were made for typical MS patients with typical MS lesions and he isn't sure there would be any benefit for me.

The one thing he has stated quite clearly is that my lesions are definitely demyelinating and they are not normal in someone my age. He told one of the med students in with us one time that white matter lesions in a younger person are never normal, but that some doctors will just call them "normal" when they don't have a clear answer for a patient. He made it pretty clear that he doesn't think that is appropriate.

I just think this whole subject is kind of fascinating and reminds us that there is so much they don't really know and understand about this disease and even about lesion formation and location.

You're welcome and I completely understand what you are saying about the BBB. That said, there are a host of people who eventually go on to be dxed with MS who initially present NO lesions. So although I can see how it would make sense to think that the breach would initially manifest itself closer to where it crosses the BBB, I can also see how this perhaps shouldn't be such a sticking point. Almost NOTHING makes finite sense with this disease!

I know I've posted this elsewhere (perhaps in this thread!) but my MS specialist told me that 90% of all demyelinating diseases turn out to be MS. Holly, I think you're on the right track -- but if it is your wish to be treated with a DMD, I hope you do go on to get an official dx.