White matter? BP and Heart rate?

[Brittan]

In MS where does the white matter normally show up on the mri? What region of the brain? They said I have white matter near ventricles bilaterally not related to infarcts.

Thoughts? Thank you ... I have been having so many symptoms ... the docs don't even know which way they are going. Neither do I anymore.

Also, does anyone have problems with their bp and heart rate? I used to have a tachycardia now my heart beat is getting slower... no where close to a tachycardia anymore. It ranges from 50's to 88. My bp is more normalized than previously - when in pain it was high.

Any thoughts would be great ... thank you!

[jreagan70]

Hi Brittan:

First thing, you've gotten your terminology confused. White matter is a normal part of the brain and spinal cord. The part of the brain and spinal cord made of nerve cell bodies is called gray matter because of their color; the part made of nerve cell axons--covered in myelin that gives them their white color--is called white matter. I think it will make sense if you google gray matter and white matter.

It sounds like what you're referring to with the label of "white matter" are central nervous system lesions (in older terminology also called plaques in MS) that are areas of damaged nerve cells. In a T2 sequence on MRIs, those lesions show up as white areas (which is how I think you got the terminology confused). (And the word lesion isn't an MS term -- it's a general term that just refers to something that isn't supposed to be there.)

In MS, the immune system damages mostly myelin and the nerve axons underneath. Because myelin is what gives white matter its name, the lesions that represent damage to myelin are in the white matter of the brain and spinal cord. (T7 MRIs are showing that MS does cause some damage in gray matter, but in everyday general medicine, it's a fine summation to say that MS attacks white matter.)

Although bank robber Willy Sutton denied saying it, the quote attributed to him, when asked why he robbed banks, is "Because that's where the money is." That real or pseudo quote has been adapted to medicine, meaning that clinicians should look for the most likely diagnosis first. So, viewed in that framework, MS attacks white matter because that's where the myelin is.

So of course you have white matter around your ventricles, because that's where myelin is. What I believe you mean is that your MRIs show white areas that are typical of brain abnormalities. The white spots don't automatically mean MS, and many white spots on brain MRIs are nonspecific.

It's the characteristics of the abnormalities that may or may not indicate MS. In MS, lesions tend to be oval or elongated rather than point-like (punctate) or round (that's not absolute).

And in MS, it is characteristic for lesions to show up around the ventricles, as well as in a few other places. General lesions around the ventricles do NOT automatically mean that the person has MS. However, significantly elongated lesions around the ventricles -- called Dawson's fingers -- do seem to be the only finding that is unique to MS.

So nonspecific lesions don't point to any specific condition. Lesions around the ventricles are somewhat indicative of MS, but could signify other conditions. If your doctors feel that your lesions don't indicate infarcts, then MS becomes a greater possibility. Since MS is not diagnosed by lesions alone, other evidence must be present to support a diagnosis of MS.

MS lesions can affect heart rate and blood pressure. Those functions are part of the autonomic nervous system. (The autonomic nervous system controls unconscious -- or automatic -- body functions.) When those functions don't work properly, the phenomenon is called "autonomic dysfunction" or dysautonomia.

I think there are members of this forum who have autonomic dysfunction attributed to MS.

The important point here is that autonomic functions are controlled by the hypothalamus and the brainstem -- where your MRI apparently doesn't show a lesion or lesions -- and not the tissues directly around the ventricles, where your MRIs do show lesions (of yet-unknown cause, apparently). So for your heart rate and blood pressure abnormalities to be easily associated with MS, your MRIs would have to show lesions in the hypothalamus or perhaps in the brainstem. Without obvious lesions in associated places, your doctors' and your work to prove a connection is harder.

Chiari malformations can affect the brainstem and thereby autonomic functions but, again, your neurologist is going to have to make that call.

You can't just assume that, because some people with MS have autonomic dysfunction, the cause of yours is MS. Based on your current MRIs, the occurrence of what appears to be autonomic dysfunction might be suspicious, but a diagnosis can't be based on suspicion.

if your neurologist can't make a call on autonomic dysfunction based on your symptoms and MRIs, it could be beneficial to get another neurological opinion.

[rdmc]

Hi Brittan:

First thing, you've gotten your terminology confused. White matter is a normal part of the brain and spinal cord. The part of the brain and spinal cord made of nerve cell bodies is called gray matter because of their color; the part made of nerve cell axons--covered in myelin that gives them their white color--is called white matter. I think it will make sense if you google gray matter and white matter.

It sounds like what you're referring to with the label of "white matter" are central nervous system lesions (in older terminology also called plaques in MS) that are areas of damaged nerve cells. In a T2 sequence on MRIs, those lesions show up as white areas (which is how I think you got the terminology confused). (And the word lesion isn't an MS term -- it's a general term that just refers to something that isn't supposed to be there.)

In MS, the immune system damages mostly myelin and the nerve axons underneath. Because myelin is what gives white matter its name, the lesions that represent damage to myelin are in the white matter of the brain and spinal cord. (T7 MRIs are showing that MS does cause some damage in gray matter, but in everyday general medicine, it's a fine summation to say that MS attacks white matter.)

Although bank robber Willy Sutton denied saying it, the quote attributed to him, when asked why he robbed banks, is "Because that's where the money is." That real or pseudo quote has been adapted to medicine, meaning that clinicians should look for the most likely diagnosis first. So, viewed in that framework, MS attacks white matter because that's where the myelin is.

So of course you have white matter around your ventricles, because that's where myelin is. What I believe you mean is that your MRIs show white areas that are typical of brain abnormalities. The white spots don't automatically mean MS, and many white spots on brain MRIs are nonspecific.

It's the characteristics of the abnormalities that may or may not indicate MS. In MS, lesions tend to be oval or elongated rather than point-like (punctate) or round (that's not absolute).

And in MS, it is characteristic for lesions to show up around the ventricles, as well as in a few other places. General lesions around the ventricles do NOT automatically mean that the person has MS. However, significantly elongated lesions around the ventricles -- called Dawson's fingers -- do seem to be the only finding that is unique to MS.

So nonspecific lesions don't point to any specific condition. Lesions around the ventricles are somewhat indicative of MS, but could signify other conditions. If your doctors feel that your lesions don't indicate infarcts, then MS becomes a greater possibility. Since MS is not diagnosed by lesions alone, other evidence must be present to support a diagnosis of MS.

MS lesions can affect heart rate and blood pressure. Those functions are part of the autonomic nervous system. (The autonomic nervous system controls unconscious -- or automatic -- body functions.) When those functions don't work properly, the phenomenon is called "autonomic dysfunction" or dysautonomia.

I think there are members of this forum who have autonomic dysfunction attributed to MS.

The important point here is that autonomic functions are controlled by the hypothalamus and the brainstem -- where your MRI apparently doesn't show a lesion or lesions -- and not the tissues directly around the ventricles, where your MRIs do show lesions (of yet-unknown cause, apparently). So for your heart rate and blood pressure abnormalities to be easily associated with MS, your MRIs would have to show lesions in the hypothalamus or perhaps in the brainstem. Without obvious lesions in associated places, your doctors' and your work to prove a connection is harder.

Chiari malformations can affect the brainstem and thereby autonomic functions but, again, your neurologist is going to have to make that call.

You can't just assume that, because some people with MS have autonomic dysfunction, the cause of yours is MS. Based on your current MRIs, the occurrence of what appears to be autonomic dysfunction might be suspicious, but a diagnosis can't be based on suspicion.

if your neurologist can't make a call on autonomic dysfunction based on your symptoms and MRIs, it could be beneficial to get another neurological opinion.

Hi Brittan,

jreagan did a wonderful job answering your questions.

And he's right about heart rate and BP being affected by lesions in certain areas of the brain. I have issues with both, but I also have a lesion in the "right" place to be causing problems.

Even with a lesion in an area that can cause problems with autonomic issues, the doctors will
need to rule out other reasons for the dysfunction. I had tests for heart and BP issues to rule out the possibility that another problem, unrelated to MS, wasn't the cause of the problem.

[Brittan]

Thank you JReagan for the information. It was extremely helpful. I know with chiari, autonomic dysfunction is a related condition due to the cerebellar pushing on the brainstem but I am unsure if this causes the lesions near the ventricles. I know within a chiari forum no one has mentioned it and many has posted their mri reports and I have yet to see the same results of lesions. I need to do more research on the autonomic dysfunction. I have many other symptoms still not accounted for w/ chiari. I do know I do not have any lesions in my cervical spine or my lumbar. I am hoping to get a mri of my thoracic spine in the next week or two to rule in/out a lesion in that area. I know 2 yrs ago I did not have lesions near my ventricles and now I do.

It has been 18+ yrs since getting symptoms and I still do not have the full picture of what is going on. It is exhausting. Any other advice would be greatly appreciated. Thank you!

[jreagan70]

Hi Brittan:

This appears to be the important take-away:

I used to have a tachycardia now my heart beat is getting slower... no where close to a tachycardia anymore. It ranges from 50's to 88. My bp is more normalized than previously - when in pain it was high.

If your heart rate and bp are more normal now without any physical neurological clues about what might have caused issues in the past, the previous cause might not have been directly neurological, like MS or Chiari. That raises the question about the value of continuing to look at the brain as the cause when there's little to no evidence there and the problem has resolved.

Elevated blood pressure in response to pain is a perfectly normal phenomenon that indicates that the sympathetic nervous system -- part of the autonomic system -- is working correctly.

Blood pressure and heart rate are a complex mix of factors. Evaluating them includes distinguishing between those times when they're expected to be elevated as a normal response to conditions and when they're not. If either one is elevated when it's not physiologically expected to be, the cause might be true autonomic dysfunction or it might not. There could be numerous causes.

In your case, the tachycardia might have been triggered by your Chiari malformation, maybe not. As poster rdmc said, your doctors are going to have to look at all of the other factors before they can determine a cause. Finding a cause becomes more difficult if your heart rate and blood pressure are normal now and all other tests related to their function are normal.

Again, the new brain lesions appear to be unrelated to any heart rate or bp issues, not only because of their location but because their appearance coincides with your heart rate and bp now being normal. Part of your doctors' job is investigating the cause of the lesions. Your doctors might be correct that they're not from infarcts, they might be wrong. There's not enough information about the lesions from what you've been able to tell us to even be able to speculate about them. Chiari malformations aren't known to be associated with brain lesions.

It sounds like you'll have to wait for more clues to reveal themselves, because the possibilities you're looking at right now aren't supporting your suspicions about what's causing at least some of your symptoms. After your thoracic MRI, it could be beneficial to take all of your MRIs and test results to a different neurology clinic for another opinion.

[Brittan]

Talked to the neuro. It appears my brain is crooked ... lol. Due to the cerebellum and it's tonsils growing and pushing/pulling it has shifted my brain. It is not just putting pressure on the brainstem and spinal cord but other areas of the brain which is causing the shift by pulling it down/inward. Due to other things in the mri they are looking at MS again ... lol ... will it ever end? But first they want to take care of the chiari and see what symptoms remain so they can treat them accordingly. I go to the neurosurgeon on the 22nd then I am sure he will sort all this crazy stuff out or at least I am keeping my fingers crossed that he will. Need to make a massive list of all the crazy symptoms and related conditions. I have heard ms is a related illness to chiari not sure of the specifics.

[kelm10]

chairi

I had a chairi malformation. My neurosurgeon did a specific MRI checking the circulation to the brain during a MRI. It is simular to a regular MRI just checking your oxygen level to the peripheral fingers. Piece of cake.

I ended up with surgery for the chairi malformation. It gave me some specific symptoms, but, for me not an elevated B/P or tachycardia for me. The most troublesome one was the off kilter and almost falling state with any significant/fast movement of my head (like when I would scoot a chair, I was sitting on, forward) and there was no bending over for me, without being on the floor, for a few days before my surgery. Surgery was easy, for me. Quick recovery and back to pre-surgical state.

Like everything else, one step at a time. You will get there.

Another thread about Chiari Malformation:

http://www.msworld.org/forum/showthr...i+malformation

[jreagan70]

I have heard ms is a related illness to chiari not sure of the specifics.

The only relationship MS has with Chiari malformation is that they're both conditions of the brain and spinal cord, and they can cause neurological symptoms that are so similar that it can be impossible to tell from the symptoms alone which condition is causing them.

Otherwise, the two conditions are not related. Chiari malformation is a mechanical phenomenon in which physical pressure affects the nerve tissues; MS is a chemical/biological condition of the immune system in which the physical location or placement of the parts of the system is not a factor.

And don't let anyone try to confuse you with the disproven CCSVI theory that proposed that constriction of the veins in the brain and neck are the cause of MS, and then you'll be led to -- or jump to it yourself -- the conclusion that a Chiari malformation causes constrictions of the veins that then cause MS. That's complete bunk, so don't go there.

It is possible that a crooked brain can cause problems with blood flow and oxygenation of the brain. That being the case, it's possible that those abnormalities on your MRI near your ventricles -- where larger veins are -- are, in fact, infarcts and your doctors are wrong that they aren't. So your doctors will have to explain why they think that it's more likely that those are MS lesions, when it's extremely atypical of MS lesions to take 20 years to show up, and less likely that they're infarcts, which can happen at any time as a result of vascular issues due to a Chiari malformation.

One of the criteria of the MS diagnostic criteria is that all other possible causes for signs and symptoms must be ruled out first. And with a Chiari malformation that can cause very similar signs and symptoms, that may be difficult for your neurologist(s) to do. I hope, for your sake, that neither you nor your doctors cut corners and decide to go with the simplest explanation just to get it over with. So my best recommendation is that you see to it that every possibility gets looked at at least twice, and that you get another opinion no matter what your current neurologists decided.

[Brittan]

Kelm10,
I noticed you said:

I had a chairi malformation.

Chiari Malformation has no cure. It is a life long illness and must be monitored. I wasn't sure if you were aware of this. Just fyi.

I am going to see a neuro surgeon on the 22nd and I'm sure he is going to rule out related conditions like tethered cord syndrome, eds, pots, etc. With my crazy bp and lower heart beat I think it also involves some form of dysautonomia. I don't get dizzy standing up - maybe once in a blue moon. But I do get feel like I am going to pass out when I stand to long or lately I'm noticed sitting in a computer chair it will hit me??? Which is weird. When turning my head quickly I noticed I do have balance issues. Lately I've noticed more of the fainting symptoms coming on - which so sucks.

I do know they need to rule in or rule out a lot of other conditions or causes prior to stating MS. I know I've been having symptoms for way too long which could be the chiari - been having issues since I was a child with fainting then teens years all heck broke out and I docs never diagnosed what the cause was. When I hit 22 everything came back full fledge and stayed ever since. Over the past 3 years all my symptoms have gotten worse.

I stopped seeing docs when I was 25 because they kept saying it could be ms or lupus and that it can take 7 - 15 years before it shows up in imaging or blood tests and I was just tired of the run around ... I didn't have the energy to keep that up. So once the symptoms got worse I started going through the whole grind again ... so I don't know. I am just taking everything one day at a time.

I remember when I was 22 and they said it could be ms or lupus at first I got real upset but then later I didn't care as long as I had a name to the face of what ever I had I'd be happy. So I don't stress over these things anymore and that is why I take it one day at a time.

I know they need to rule out everything first prior to any diagnosis of ms especially since the chiari malformation has added many related conditions to be checked out.

All I can say is one day at a time. The neuro did say that due to the chiari - all other conditions are basically thrown out the window at this point until the cm is addressed and see what is left as far as symptoms. CM can actually cause osteoarthitis due to the pressure it is putting on the spinal cord, etc. I was diagnosed with that when I was 22 yo. Also the radiologist is the one who said the mri showed lesions w/out infarct. I know many chiarians on the fb groups I'm on many have not had similar lesions to mine so I am just taking it one day at a time.

JReagan70: I kind of assumed if my brain is crooked then the brain stem and cerrebellum is pushing/pulling causing it but if that's the case then it would look like infarcts? Correct? Which the radiologist said no to. If the radiologist is correct then I need to research the related illness to cm more. I totally want to be prepared when I see the ns.

[jreagan70]

I kind of assumed if my brain is crooked then the brain stem and cerrebellum is pushing/pulling causing it but if that's the case then it would look like infarcts? Correct? Which the radiologist said no to. If the radiologist is correct then I need to research the related illness to cm more.

That's an unknown because you haven't posted exactly what the radiology report said. It isn't necessarily that the lesions don't look like infarcts, because infarcts can look pretty nonspecific, particularly when they're small. It's that if they look like other nonspecific lesions with various possible causes, it can't be said that they're not infarcts.That's why infarcts are usually on the list of possibilities when lesions are nonspecific.

So the radiology report should explain why the abnormalities on your MRI look too specific to be infarcts. And in that case, the radiologist should have an idea of what the not-nonspecific lesions look like. MS lesions tend to look a particular way -- generally more oval than round. So what did the radiologist say they do more specifically look like, with enough confidence that infarction can be ruled out? if they're not nonspecific, what are they specific enough to look like?

Without a description of the lesions, what's left are some possibilities of low likelihood -- so it will probably take more than one medical opinion to come to a conclusion.

1. Chiari malformations aren't known to cause brain lesions. However, if there has been enough vascular trauma, there is a physiological explanation for infarcts, so the possibility can't be entirely thrown out.

2. It's highly unlikely that it would take almost 20 years for MS lesions to show up. That possibility is even less likely than the possibility of vascular damage and infarcts from 20 years of the traumatic effects of a Chiari malformation, so 20 years of MS has to, physilogically, go to the bottom of the list. You might think it's possible if you assume that your symptoms going back 20 years are from MS. But because the symptoms of a Chiari malformation can be the same, it doesn't make sense to assume that the symptoms would be from something that hasn't been showing the characteristic signs rather that something that is.

3. The MRI abnormalities might be from something that hasn't been considered yet. But since that's a wild card so far, it also goes to the bottom of the list.

4. It's possible that the lesions are MS lesions. But since there's no relationship between Chiari malformation and MS, the possibility of MS means that everyone, including you, must abandon any inkling of an idea that the Chiari malformation somehow "caused" MS. That's physiologically not possible. And from what you have said about the location of the brain abnormalities on MRI, none of them are in places that would contribute to your heart rate and blood pressure symptoms.

5. Allowing, for sake of argument, that the abnormalities are MS lesions, the characteristic behavior of MS is that it has probably been in existence for no more than 10 years, and possibly less than 5 years. It would be be an unusual coincidence to have a Chiari malformation and then develop MS many years later, but that is physiologically possible.

AND other tests should support MS, such as an LP and evoked potentials -- something that's specifically characteristic of demyelination, not just nerve trauma.

Again, it may -- and should -- take more than one medical opinion to figure out a complicated case like yours. Your research into Chiari, including talking with other people who have a Chiari malformation, isn't enough to crack the case on its own. So I hope you can get an opinion from one or more neurologists at a top-notch neurology clinic who can do all of the pertinent tests and interpret the results properly.