Hello everyone :)
 

New here but wanted to verify what I've read to make sure I'm understanding MS lesion locations correctly. MS lesions aren't normally found within the subcortical and pericallosal areas correct?

As a migraine sufferer they have found many brain lesions (never looked anywhere else for any though and automatically assume my lesions are from headaches) so many that my MRI report now reads heavy burden of white matter plaque within the periventricular, subcortical and pericallosal regions. But sadly my migraines aren't explaining away most of my issues.
For over a week my arm felt as if it was on fire, when I called my neuro he prescribed neurotin and within a week it finally stopped. I've had balance issues for about 5 years now, for my worst fall I received a broken jaw, the rest bumps and bruises (maybe a black eye or bloody lip here or there), randomly my hands or feet will feel tingly (as if they have just fell asleep) but all of it won't go away with normal shaking and wiggling like it normally would. Then there's this unbelievable tiredness. And I mean just totally drained... Very hard to explain how exhausted I feel. I'm also having problems with my memory, I can't find the words I want sometimes mid sentence or forgetting what I was doing while I was doing it. I've even got lost in town once. Before I started having alligator tears roll outta my eyes I came to the end of the road and knew where I was but I was absolutely terrified. (Mind ya I won't tell anyone about this so they don't think I've completely lost my mind even though I'm starting to wonder myself)

I live in a very small town and we only have 1 neurologist. I saw him for 5-7 years reported several of these things to him and simply kept being told it's nothing to worry about. I have recently started seeing a new neuro over a hour away. I'm very reluctant about talking to him also due to the same dismissive treatment I keep getting from others. So am I loosing my mind or could there be more going on it's just the pitiful Drs in my area dismissing me? Any info or thoughts would be helpful :)

Hello LostOne76 and welcome to NeuroTalk.

Since you have had MRIs is there any indication from the report and/or the Neurologist as to what the findings may indicate?

I understand but you really do need to talk to him openly and honestly so you can figure out what is going on, MS or something else. There is a criteria for diagnosing MS, The McDonald Criteria. Part of ruling in MS means other causes need to be ruled out.

Your cognitive symptoms sound concerning :( I am wondering if you are taking any medications that might possibly be causing a problem (?)

Is there any possibility of seeing a neurologist in a larger town?

The impressions from the last MRI simply said "Features consistent with heavy burden of white matter plaque compatible with the clinical history or MS"

So I'm assuming since the radiologist didn't say a simple yes or no to anything my current neuro doesn't know either.



I'm going to try to get referred else where but no telling how long of a drive it will be. The last time I went to see my regular neurologist I kept wanting to pull over and take a nap and it was only a hours drive. :/

To LostOne
 

th heavy burden of white matter plaque compatible with the clinical history or MS"*

So I'm assuming since the radiologist didn't say a simple yes or no to anything my current neuro doesn't know either.*

I wouldn't be too quick to assume your neuro doesn't know, or that the phrase means undetermined. Every MRI I've had and all I've seen of other folks' says the same, or nearly the same wording.

I think (with my 20+ years of progressive MS) you need to sit down w/your neuro, have him/her explain the films - the white matter. Get a copy of the MRI cd before you leave. Yes, you get one upon request.

After that appointment, please come back to us and let us know how it went. We are your newest friends and we're here to support you!

Before reading what I have to say, keep in mind that anything you read here is worth exactly what you pay for it. Also, welcome to NT! With that said, MS lesions can occur nearly anywhere in the brain or spinal cord. Based solely on what I have read and what my neurologist has said to me, they are commonly found in the periventricular white matter and the corpus callosum.

However, there are other disorders or diseases that can also cause things that appear to be lesions in those areas on an MRI. So the radiologist is not going to be able to give a diagnosis based simply on what is visible on the scan and where it is. They will give an impression of what they think is most likely...based mainly on location, shape, and factors such as age of patient. But they will almost always make a statement to the effect that "clinical correlation" is needed for diagnosis. In other words, the radiologist has not seen your full chart, they are not reviewing your blood tests, spinal tap results, or your description of symptoms. They give an idea of what they are seeing in the report, and expect your neurologist to follow that up by matching what is on the scans to your symptoms and other test results.

So with all of that said, you need to find a doctor you trust. You and/or your insurance company are paying too much money for you to walk out of the office not happy with the service and attention you received. Find somebody to drive you as far as you have to go to get a doctor who you believe in, that will listen to you, and who will personally review the MRI scans you bring in on a CD and compare them to your symptoms and results.

Life is too short to wander around hoping bad doctors will change next time we see them. We pay too much for care to feel that way, so fire your doctor if you need to, get a full copy of your records including your scans on CD/DVD, and all other test results. Then go find a good doctor.

The second part of that is to educate yourself, and speak up for yourself when talking to the doctors. Don't let them leave the room until you are satisfied with their answers. If you educate yourself before you go in, and take a list of questions with you, it will help keep you focused on the things you want to ask them about. Good luck, and keep asking questions here! There are some great people here who can help you if you let them.

We have an abundance of neuros in town but we also have a big medical center and medical school up at Indianapolis so after making a preliminary diagnosis mine made a referral to see an actual MS specialist. He conferred with her in the diagnosis but was glad that I saw a specialist. Insurance paid for part of it but was able to take travel off on taxes. Just gave me a lot of peace of mind. As to your original question, I don't know the answer to that.

I've only had the getting lost happen once. And I am just hoping it was because I was seriously distracted.

Nope, I'm not taking any medication regularly, other than Neurotin/Gabapentin (just started it last month) for the burning pain I feel in my arms/hands. (I had to call and see my regular neuro because the burning wouldn't stop. I waited for a week and then it took another week for the neurotin to start working.)
None of the migraine meds they've ever put me on have worked.