Brain MRI's and MS

[Anni]

Hello-
How reliable are brain/cervical MRI's when it comes to looking for lesions? I have never had migraines and am 35 years old.

My ex-neuro said that I don't have MS because all I had was:

"scattered mild punctate FLAIR hyperintense signal changes within periventricular deep white matter and subcortical regions of the frontal lobes. No evidence of abnormal enhancement. Findings are nonspecific. Demyelinating process is not entirely excluded." Apparently a radiologist would not exclude demyelinating process, what could this mean, apparently, the ex-neuro didn't think it meant anything. I disagreed, feeling the way my body does...

Are these lesions?
Anyone familiar with the jargon of brain MRI and its implications?

Thanks, Anni

[jumpinjiminy]

Apparently, I've had migraines for years but no lesions. Personally, I think the whole thing is suspect. Migraines are an inflammatory process in the brain by current thinking. If I've had these migraines, why aren't there any lesions to support that? But I can get a migraine dx despite lack of lesions to support it based on personal history. However, my personal history is more suggestive of MS, but I can't get a dx based on lack of lesions to support it. It's like a double standard.

You see?

[momoffour]

I did get migraines quite a bit. I had been on Imitrex and Relpac--I think that's what it was! Anyway, when I was first diagnosed, I had two black spots in my brain, and two white (active lesions) spots in my neck. My neuro at the time told me that the ones in my brain weren't typically where MS occurs, and that most likely they were the results of my previous migraines. My new neuro has since said it's hard to tell whether it was past migraine or past MS, so who knows. What is odd is that since my diagnosis, I haven't had a migraine at all (hopefully I'm not jinxing myself!) although I do still get regular headaches.

My family doctor was on vacation at the time of my MRI results, but I couldn't wait. I called and spoke with another doctor in the group, and he told me that the radiologist said I had demylinating disease. When I asked him what that meant, he said he wasn't prepared to discuss that with me. He basically told me what the MRI said and left me on my own. However, I found out that demylinating disease doesn't necessarily mean MS...it's all so confusing.

I would maybe get a copy of your MRI and go to another doctor for a second opinion.

[Shashi]

I have five T2 hyperintense non-specific foci. (When my symptoms first started five years ago, I didn't have any.) The nurse practitioner at my neurologist's office seems to feel they are due to high blood pressure, even though my blood pressure has never been exceedingly high. When I asked the neurologist, who is an MS specialist, what she thought they were significant for, said that we haven't ruled out MS. So, who knows.

You might want to get a second opinion. In fact, I might want to get a second opinion too.

Good luck and hugs,

Lisa

[Anni]

Apparently, I've had migraines for years but no lesions. Personally, I think the whole thing is suspect. Migraines are an inflammatory process in the brain by current thinking. If I've had these migraines, why aren't there any lesions to support that? But I can get a migraine dx despite lack of lesions to support it based on personal history. However, my personal history is more suggestive of MS, but I can't get a dx based on lack of lesions to support it. It's like a double standard.
You see?

Yes, it's insane that you can tell the neuros: I've never had migraines, I don't have hight blood pressure, and I am only 35. What are these mild punctate spots then, of course they say it's not MS because they don't fit that shape and they get a blank look on their face and say they don't know what else it could be. Indeed double standard, how can they claim that migraines can cause these "nonspecific" spots and then diagnose when you don't even have these "nonspecific" spots?
Are punctate spots the same thing as lesions, I was not able to get a straight answer from my ex-neuro?

[Anni]

I did get migraines quite a bit. I had been on Imitrex and Relpac--I think that's what it was! Anyway, when I was first diagnosed, I had two black spots in my brain, and two white (active lesions) spots in my neck. My neuro at the time told me that the ones in my brain weren't typically where MS occurs, and that most likely they were the results of my previous migraines. My new neuro has since said it's hard to tell whether it was past migraine or past MS, so who knows. What is odd is that since my diagnosis, I haven't had a migraine at all (hopefully I'm not jinxing myself!) although I do still get regular headaches.My family doctor was on vacation at the time of my MRI results, but I couldn't wait. I called and spoke with another doctor in the group, and he told me that the radiologist said I had demylinating disease. When I asked him what that meant, he said he wasn't prepared to discuss that with me. He basically told me what the MRI said and left me on my own. However, I found out that demylinating disease doesn't necessarily mean MS...it's all so confusing.

I would maybe get a copy of your MRI and go to another doctor for a second opinion.

I really wish neuros would be straight with suffering patients. I wish they would break down the implications of brain changes, as brain changes like mine at my age with tiny spots in brain can't be nothing, but I made it clear to the ex-neuro that I've never had migraines nor headaches, nor high blood pressure, not any other injury. So I said to the neuro, it's not any of those, so what is it. Well it's not MS, she said, because those don't look like typical MS lesions and are not in typical areas. But DR, I read that periventricular and subcortical (my is frontal) are common areas of brain lesions? Answer, you don't have MS. Goodbye!

I am due for my 6 month brain MRI, but do not want to return to the ex-neuro, Is it common to ask a new neuro to write an order for a follow-up brain MRI?
I have a new neuro appointment in 1 month, so I want to be prepared. Any advice would be appreciated. I will be taking my old mri's with me and reports too.

anni

[Anni]

I have five T2 hyperintense non-specific foci. (When my symptoms first started five years ago, I didn't have any.) The nurse practitioner at my neurologist's office seems to feel they are due to high blood pressure, even though my blood pressure has never been exceedingly high. When I asked the neurologist, who is an MS specialist, what she thought they were significant for, said that we haven't ruled out MS. So, who knows.
You might want to get a second opinion. In fact, I might want to get a second opinion too.Good luck and hugs,
Lisa

hi Lisa, indeed, am going for new opinion in one month. How can they not be able to explain what these foci/punctate things are, it's their specialty after all? Did she say why she couldn't rule out MS if those foci/punctate thing are not suppose to be MS indicative (that's what many Neuros claim). It would be nice if they would talk about what these spots could mean (besides migraines(not me), high blood pressure(not me), brain injury (not me))...how about MS and other diseases that could cause these spots which could account for our symptoms, DR...sorry if I seem sarcastic, but we are all losing precious time when these Neuros are jerking us around; perhaps DR, you could be less lazy and do some extra research in those books of neurological diseases and brainstorm what other disease could be causing your patients symptoms (other than psychiatric disorders). I've read about so many people being pushed to the psych route, it's sad. (notice that all neuros have "neurology/psychiatry" in their title, it's suspicious.
So it sounded like even though you didn't have typical MS lesions, the DR couldn't say that these spots weren't MS?

*hugs back at you* Anni

[Shallwearpurple]

Neurologists and other doctors...

Anyone else here think these doctors give vague answers because of the high rate of law suits for malpractice?

My neurologist would not tell me that I do not have MS, but he told my GP that he doesn't think I have it. ???My GP didn't pay the bill. Why didn't I get the explanation? However, then I find that my GP didn't get an explanation either, just a short answer just like I got. He wasn't very happy about it either.

[Shashi]

You'd think if it looks like a duck and quacks like a duck, they're realize it was a duck and not a cow!

But that's not how they think, evidently. I've been going through all this for five years now and seem to be no closer to a diagnosis than I was when I started.

It's just so frustrating!

Oh, and no, she didn't say why she couldn't rule out MS. Maybe it's because she's ruled everything else it could possibly be out. When I first started all this, my MRIs were "so perfect they were almost abnormal" according to the MS specialist. Over five years, I've popped out five bright spots. Two of them are in the frontal lobe, a couple are in the temporal lobe, and one is in the occipital lobe. Most are subcortical, except for the one in the occipital lobe which is further into the white matter. I guess I just have to wait for one to pop out where it's supposed to. Wonder how many more years that will take?

Again, good luck. I hope you get some answers soon!

[1_4_Kimberly]

I am due for my 6 month brain MRI, but do not want to return to the ex-neuro, Is it common to ask a new neuro to write an order for a follow-up brain MRI?
I have a new neuro appointment in 1 month, so I want to be prepared. Any advice would be appreciated. I will be taking my old mri's with me and reports too.

anni

You don't have to return to your ex-neuro. When you go for 6-mo. MRI, just ask to send report to whoever you want, like new neuro, all you have to do is ask, OR I always ask for a report for myself. I find out results way before I see my neuro., heck, probably before he reads report. I do this when I go for bloodwork or anything.

You should also ask ex neuro for copy of your current file. They have to give it to you if you ask. (Some places may charge for it.) I keep copies of everything now. Good luck!

[Lendi]

You'd think if it looks like a duck and quacks like a duck, they're realize it was a duck and not a cow!

Well, one problem is that although it might not be a cow there are lots and lots of different species of ducks.

Likewise, lots of reasons for lesions even in the same location. Age, different disease processes and yes migraines as well as strokes and well on and on. Lesions simply mean scars they can be caused by so many different reasons.

And then neuro's also have to factor in other SX's that point to one disease or another as well as ruling so many other diseases out. So, so many are so very close to the same. It's like a giant puzzle that may have gotten other puzzle pieces mixed in. It all has to fit and go together.

I had migraines bad ones. Long ones that lasted weeks on end. That was why I was sent to the neurologist in the first place.

At a later date, total denial I might add on my part, I tried my best to convince my neuro that maybe I don't have MS but had migraine lesions instead. He explained to me about the different types and locations and the way they look and how he came about the DX.

BTW, there are painless migraines that do damage as well.
I still don't like it and I wish I could explain it to you like he did to me but it did make sense.

Sorry to long winded. I wish you only the best I'd go to another Dr. to make sure too. You just never know what one might find that another might not.

[Anni]

Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg)


Hi, I saw you are using these and wondered about your experience. I've read that lipoic acid is useful in helping MS perhaps, in studies? Any thoughts or knowledge on this topic?

[Shashi]

Anni, I use alpha lipoic acid and acetyl L-carnitine primarily for relief from fatigue. I've been taking them for almost two years now and they work great for that.

I do know that there have been some studies regarding their benefits for MS. Sequoia could tell you more about that though. Check out the nutrition board for more discussions about these supplements or do a search for them here. You'll find a lot of great information about them.

[owlnona]

They are very reliable. I've been kinda going down hill & my neuro did an MRI last mo & called & said "No new leisions" Praise God! Now my Vit D levels are beyond low & he took a special blood test just for Vit D & I'm still waiting for the results.
He was telling me they have found Vit D has a big impact on MS,so I'll wait & see.
I've had 2 neuro reports that told me I could be sliding into whats called " Secondary Progressive MS" I've been DX for almost 11yrs,& that can happen after a long time.
I don't worry It's in Our Lords hands,I let my neuro worry,he's good at that LOL!
God Bless Nona Judy

[1347271071@facebook]

Hi, Anni, and all!

One thing I also remember about my first MRI is that they told me that as you age, you tend to get those black spots as well. He said typically you will find at least one, but that it isn't uncommon in an autopsy to find more than one. Nice thought, huh??? Only one of the reasons that I switched. But I guess the meaning is that the black spots don't have to be from migraines.

I go to the Cleveland Clinic now. My family doctor diagnosed me so quickly, and although I hate the diagnosis, I'm thankful it didn't drag on. He referred me to a local neurologist (Dayton doesn't have a whole lot of them) but my doctor promised me that IF the diagnoses was seconded as MS, he would get me in to either the Cleveland Clinic or Ohio State University. I chose the Cleveland Clinic as I had a friend with MS who went there.

When I went, the doctor in Cleveland agreed to be my main and only neurologist. How lucky is that? It's a long drive, but I'm thankful to be there. I brought my MRI CD with me and all of my medical records, both from the family doctor and local neurologist. It wasn't a problem at all to get any of the records. You do have to call ahead and sign a consent form, and it might take a couple of days to get everything.

The doctor in Cleveland looked over everything, read everything, did a neurological exam, etc. It was over an hour appointment with him, and not once did I feel rushed. I brought a list of questions, and he answered everything.

I know this is a long post, but what I'm getting at is definitely go to a new neuro and take as much info with you as you can. Write down symptoms, everything. Good luck and keep us posted!

Lisa --oh, for some reason this signed me in through FB. I was "momoffour" the other day, and that's typically my name on here. Real name is also Lisa.