Rapidly formed brain lesion. What happened?

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Postby bluesky63 » Fri May 06, 2011 2:36 am

Willowford, if you would be so kind, I am very interested in some specific issues regarding lesions and MRI.

* Some doctors diagnose people with MS even if their MRI is completely clear. Therefore that must mean that some people can have flare-ups and disability and progression that is not reflected on their MRI. How is this consistent with the definition of MS?

* Some doctors believe that unless you have a corresponding lesion on your MRI that directly reflects clinical symptoms you are presenting, then you are not having MS activity, and therefore your symptoms cannnot be from MS. And yet in support groups, patient after patient will share their stories of how annoying this is. Is this a case of an incorrect assumption from the doctors, or just a few uninformed doctors, or something else entirely?

* Some doctors believe that the MRI does not correlate to the clinical picture and they use it as a general snapshot every few years but they don't try to exactly match presenting symptoms to specific MRI lesions. Are these doctors doing it right? Why the different approaches? Is there a consensus behind the scenes?

* Some people never have enhancing lesions. Never. If one of the hallmarks of active disease is a breach of the BBB, shouldn't there be enhancement sometime? Many MS doctors do not seem troubled by this, and yet this seems to go against the concept of the definition, just the same way that a clear MRI would.

Shall I go on? :-) Is it the end of the semester yet? :-)
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Postby willowford » Fri May 06, 2011 3:51 pm

Bluesky, I appreciate your posts - they usually make me think and have to look things up that I have forgotten.

It's tough to know why a doc does something. But I can speak to the research on this topic, which almost all neurologists rely on. MRI and MS are far too complex for us to fully understand (unless it’s our job, and even then...). A more detailed answer is therefore long! So please forgive the length. (even what I write below will likely be missing a dozen other factors I haven’t thought of or learned).

In all the scenarios you noted, it's impossible for us to know what the doc was thinking. First, because we are missing the 5-6 years of post-med school training specifically in neurology and the experience with 1000s of patients. But also, even other neurologists would never attempt to explain another neuro's decision without actually examining the patient and seeing all their history and results.

bluesky63 wrote: Willowford, if you would be so kind, I am very interested in some specific issues regarding lesions and MRI.
* Some doctors diagnose people with MS even if their MRI is completely clear. Therefore that must mean that some people can have flare-ups and disability and progression that is not reflected on their MRI. How is this consistent with the definition of MS?


I can’t even begin to discuss the complexity of diagnosing MS (may sound simple to a bystander) here, because it is a heavily multifaceted issue.

Briefly, various diagnostic criteria have come and gone over the years. You might know that MS used to be a purely clinical diagnosis (based on symptoms). And even then, it wasn’t that simple. The available categories were “probable MS”, “possible MS” and “unlikely MS”. Even as recent as the 80s-90s, the criteria for MS was heavily based on clinical symptoms (See Poser criteria).

Now that MRI is universally adopted, neuros use the McDonald criteria for diagnosis, which relies on both clinical presentation AND other findings such as MRI. (See McDonald criteria revised for 2005 version). Even this new criteria has its limitations (as with everything in life). This criteria requires MRI confirmation of lesion (lesion must also be "disseminated" in time and space).

In your scenario, one possibility of the individuals you're referring to is if they were diagnosed before this criteria was established (2001) or used in their country; their neuro may have diagnosed based on symptoms only.

Or the diagnosis was so classic of MS, that the doc decided to let the patient know before getting the MRI back – which might spare them the agony of waiting.

Keep in mind the possibility of a misunderstanding between what the doc meant to say (or said) and what the patient heard (or understood or relayed to others). <-- I have seen this often.

* Some doctors believe that unless you have a corresponding lesion on your MRI that directly reflects clinical symptoms you are presenting, then you are not having MS activity, and therefore your symptoms cannnot be from MS. And yet in support groups, patient after patient will share their stories of how annoying this is. Is this a case of an incorrect assumption from the doctors, or just a few uninformed doctors, or something else entirely?


I’m just imagining a patient going in with severe new symptoms and being told it’s not their MS flare-up without further treatment or investigations as to what it is. How frustrating! I hope this isn't everyone's experience.

A few things that we know from the literature that the doctor MAY be relying on:

1) A clinical relapse is caused by something NEW going on in the brain (currently, white matter lesions are believed to underlie relapses). If there’s truly no brain abnormality, then one is not having a relapse. HOWEVER, just because we can’t see lesions on the MRI, doesn’t mean they aren’t there... so relying on them exclusively and ignoring the clinical aspects has been criticized by some experts. Also, there are other factors than white matter lesions than may be involved (more on this coming up).

2) Doc may be thinking patient is having a "pseudo-exacerbation": refers to recurrence of old symptoms (nor reflecting “new brain damage”), short duration of symptoms (not characteristic of a true relapse), and other health problems not related to MS leading to worsening of symptoms (e.g., urinary tract infection in women can lead to urinary frequency, which mimics the symptoms of an MS attack). Just because a person has MS doesn’t mean that all their symptoms are going to be due to an attack. If the neuro doesn't think it's MS-related, then it would be reasonable to rule out other probs with the family doc.

* Some doctors believe that the MRI does not correlate to the clinical picture and they use it as a general snapshot every few years but they don't try to exactly match presenting symptoms to specific MRI lesions. Are these doctors doing it right? Why the different approaches? Is there a consensus behind the scenes?


The doctors’ beliefs you noted are likely based on studies of patients with MS whose symptoms were measured and recorded over time and compared to their MRI scans to see the degree of correlation.

The correlation between symptoms and MRI white matter lesions (the ones we see with standard MRIs used for clinical purposes) is weak to modest. The specific value depends on which symptom we’re talking about. These lesions also have weak to modest relationships with disease progression. But weak to modest relationship means that there IS a connection, it's just not perfect. This also tells us that there is other things going on in the brain (more below).

If brain abnormalities are the immediate cause of symptoms, then why isn't the association between lesions and symptoms perfect?

1) Imaging technology: it has improved greatly, but not yet enough for us to see everything. For instance, for clinical purposes 1.5-T MRI is used. In research, the newer 3T is used, and shows better anatomical details (it's being introduced now for clinical purposes, at least in North America). Even that won't show everything though.

2) White matter lesions reported in clinics are not the only factors related to symptoms. First, there’s different types of lesions meaning different things (hypointense, hyperintense, etc). Then, there’s all sorts of other measures that we know of through studies using different imaging techniques (diffuse white matter damage, brain volumes, gray matter atrophy...etc), some of which are measured by other methods than MRI. Some of these are independent of lesions.

And we now know that even “normal-appearing” grey or white matters have subtle abnormalities that are not reported in standard clinical reports. They are in fact called “normal-appearing” because they appear normal on most MRI scans.

One of many good sources on some of this stuff is Grassiot, Desgranges, Eustache, & Defer (2009)

So docs do rely on info about white matter lesions available to them, but realize that it's not the full picture. If we include all of the various known brain factors into the equation, we would get a better correlation between the MRI picture and symptoms (and studies so far have confirmed this). But even then, it would not be perfect until we know everything about all the things going on in the brain to lead to symptoms.

* Some people never have enhancing lesions. Never. If one of the hallmarks of active disease is a breach of the BBB, shouldn't there be enhancement sometime? Many MS doctors do not seem troubled by this, and yet this seems to go against the concept of the definition, just the same way that a clear MRI would.
Shall I go on? :-) Is it the end of the semester yet? :-)


Gd-enhanced lesions usually reflect "new" lesions (less than 6 weeks). Later on, they will appear different on MRI. This may be one explanation to your scenario.

As I mentioned, there are different types of lesions, so there are patients who have cortical lesions (shown in diffusion MRI and other measures) that never show up as Gd enhanced lesions. These lesions are different than typical white matter subcortical ones.

Again, if the patient is not well-versed in MRI technology (most of us are not), then the issue of miscommunication and misinterpretation comes to mind here too.
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Postby itaska21 » Sat May 07, 2011 4:07 pm

These are all very informative posts. :D The complex relationship between symptoms and lesions. I personally would've just been so THANKFUL to know I had another lesion to factor into this ongoing disease! The doctor NEVER even contacted me for an appointment when the actual radiology report was received by her. All she did was give me her own interpretation of the mri right after having it done. Oh, and she did look at the 2009 mri too while I was there. By the way, she made some sarcastic remark to the poor student who was shadowing her that day about patients doing online research, and how counter-productive it was.... I won't even say what I think about that! :evil:
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Postby willowford » Sat May 07, 2011 7:16 pm

itaska21 wrote:These are all very informative posts. :D The complex relationship between symptoms and lesions. I personally would've just been so THANKFUL to know I had another lesion to factor into this ongoing disease! The doctor NEVER even contacted me for an appointment when the actual radiology report was received by her. All she did was give me her own interpretation of the mri right after having it done. Oh, and she did look at the 2009 mri too while I was there. By the way, she made some sarcastic remark to the poor student who was shadowing her that day about patients doing online research, and how counter-productive it was.... I won't even say what I think about that! :evil:


I read about your experience earlier. So sorry to hear that you didn't get a call to go over the results! Do they actually send results directly to patients where you are? That could be upsetting to someone who is getting "bad" news! To have to go through it without being able to ask questions, make comments, discuss it...etc.

I wish there was some way of streamlining the process so patients know what sorts of info they will be receiving for sure immediately, and doctors know when to call patients to give them info.

Some docs automatically might assume that patients don't want to know something if it doesn't change their treatment/care... or might worry needlessly. This is a paternalistic approach (in my opinion) that medicine is trying to get away from in the last decade or more. We can't just assume we know what other people wants/needs. It would be great if the docs would have a conversation initially with every new patient to find out early on what types of info and how much info they want to know.

You bring up an interesting issue about patients looking up info online - one that I'm very interested in exploring. It's not specific to MS... it's in most fields nowadays. It's amazing to have patients who are knowledgeable and care about their health. This way they are less likely to neglect certain treatments that they might otherwise not take seriously - like high blood pressure/ sugar...etc. Things that don't immediately cause symptoms.

The issues that arise for healthcare workers is that some patients might go in with their own prescription and just ask for a signature from the doc (figuratively of course) without letting the doc explore the issue.

Like the parent walking into their fam doc office and saying they "need" antibiotics for their kid, and not even ask the doc to examine their kid, who might in fact have a viral infection. They may not realize all the (contra)indications for antibiotics, and may not realize how it could affect other organ systems bc they are worried about the one infection.

These types of things might cause some issues over time in the healthcare system (one e.g., if the doc doesn't heed to the patient, we might see him as mean/uncaring; if he gives up and prescribes whatever patients ask for, when adverse effects arise, the doctor is blamed for giving unneeded treatment or giving treatment despite contraindications). <-- this happens all the time and has adverse effects on ppl's health, esp kids.

I'm really interested in seeing what the solutions could be to these issues... for making sure that docs consider the info that patients come in with and take them seriously and that as patients, we are informed and fully involved in the decision making process regarding our health (if we so choose) but that at the same time, we also are able to understand that issues are more complex than we often realize (or have time to learn) and seek help from an expert we trust (this goes for any field, from law to plumbing to dentistry).

One possibility: Would you have appreciated it if ur doc had discussed her concerns about internet info with you and had a conversation about what information you'd like to have and maybe provided you with reliable sources? (rather than making a remark to someone else in your presence - which clearly did not help anyone and even hurt your therapeutic relationship)

I can't think of another solution yet, except for training everyone in every organ system and classes of drugs etc. so they can consider everything on their own (takes at least 6 years full time - same training as a family doc). Un-doable for most, I realize :)

In the meantime, I really hope you're able to find a doc who you trust and who will work with you and help you make decisions about your own health.
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Postby itaska21 » Mon May 09, 2011 6:49 pm

I think as patients we should be pro-active in a practical manner. Thankyou Willowford for your insight on this. I personally try to limit my MS information research to the websites directly affiliated with MS organizations. I can respect their apprehensiveness on the whole matter involving self-diagnosis. I would hope, that on the other hand, they could respect their patient's enough to listen to the information we present to them and respectfully share their knowledge on whatever the topic may be. It would require a certain amount of sensitivity training to achieve that. There are several types of practice management programs offered that healthcare professionals can participate in. :)
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Postby sous » Tue May 17, 2011 9:38 am

hi, what is CNS?
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Postby euphoniaa » Tue May 17, 2011 9:45 am

sous wrote:hi, what is CNS?


Basically,
CNS = Central Nervous System (brain & spinal cord)
PNS = Peripheral Nervous System (all the other nerves in your body)
Both of my nervous systems are demyelinating. :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby willowford » Thu May 26, 2011 2:20 pm

Has anyone managed to get over a cognitive relapse? I have just found out I have a big lesion that has formed in the right lobe in the emotion/executive tasks area and my brain has been mush for 8 weeks now. It has let up about 20% but I am still basically useless and worried it is going to progress to dementia or something. Anyone been through this? and got their personality/brain back?

Itasksa have you noticed any cognitive issues with your lesions?


Sorry to hear this! I cant respond directly to your question about going through this. But I'm a cognitive-MS researcher in training and this is my area -I basically see and read about this all day everyday for the past 3 years. So I hope you don't mind me "budding in".

Cognitive problems are common in MS as you might know. But they aren't always related to the types of lesions we see on MRI (not a perfect correlation). Depends on a number of things like where exactly are your lesions, how long have you had MS, what type of MS, what exactly you mean by being "useless" (what function is affected, whats your previous level of cognitive functions, is this during an acute attack or has the attack itself subsided (this is very important)? Also helpful is if formal cognitive tests have been done and their specific results.

What I can tell you for sure from what you wrote is this: cognition does get worse in many patients with MS during an attack and many don't even notice it but it does often recover (prognosis/ chances of recovery depends on the above and other factors, so more info needed), and more importantly, overt cognitive dysfunction (such as dementia) is extremely rare in MS! So if that's your primary concern, I would hope this makes you a little less worried.

If there's anything I can answer (or help you find the answer to), let me know, I'd be glad to help; I see people worrying about this/ experiencing this a lot and I love seeing people worry less when they get the answers they need. And sorry for budding in.
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Postby jimmylegs » Thu May 26, 2011 2:53 pm

itaska, and lr, when my brain was mush and i had an active lesion, it led to a long road of discovery. it started with the zinc, linked up to uric acid levels. i also noticed that i suddenly was a bunch less stupid once i corrected the zinc deficiency.

this week it came full circle. i know that low zinc means your body can't do the urea cycle right. it means that you don't process toxic ammonia properly. i found out this week that a patient with a level of zinc only one point lower than mine resulted in ammonia levels up in the 700s, when the normal range is 15-45. units in related recent posts by me.

related to your specific question, i just found this article on hyperammonemia and brain edema (read: slow blood flow) and brain lesions. yes it is a rat study but still interesting. and this:

http://www.ncbi.nlm.nih.gov/pubmed/15112350
Hyperammonemia, brain edema and blood-brain barrier alterations in prehepatic portal hypertensive rats and paracetamol intoxication.

http://onlinelibrary.wiley.com/doi/10.1 ... 6/abstract
Induced hyperammonemia alters neuropsychology, brain MR spectroscopy and magnetization transfer in cirrhosis

have you been keeping up with your zinc and do you know your level?
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby willowford » Thu May 26, 2011 3:01 pm

jimmylegs wrote:lr, when my brain was mush and i had an active lesion, it led to a long road of discovery. it started with the zinc, linked up to uric acid levels. i also noticed that i suddenly was a bunch less stupid once i corrected the zinc deficiency.

this week it came full circle. i know that low zinc means your body can't do the urea cycle right. it means that you don't process toxic ammonia properly. i found out this week that a patient with a level of zinc only one point lower than mine resulted in ammonia levels up in the 700s, when the normal range is 15-45. units in related recent posts by me.

related to your specific question, i just found this article on hyperammonemia and brain edema (read: slow blood flow) and brain lesions. yes it is a rat study but still interesting. and this:

http://www.ncbi.nlm.nih.gov/pubmed/15112350
Hyperammonemia, brain edema and blood-brain barrier alterations in prehepatic portal hypertensive rats and paracetamol intoxication.

http://onlinelibrary.wiley.com/doi/10.1 ... 6/abstract
Induced hyperammonemia alters neuropsychology, brain MR spectroscopy and magnetization transfer in cirrhosis

have you been keeping up with your zinc and do you know your level?


Severe liver disease (like cirrhosis article you posted) as well as kidney disease also lead to the blood toxicity you talked about... and in severe untreated cases lead to encephalopathy (which leads to cognitive dysfunctions of the type not seen in MS - like gross dementia, etc). These are cases of severe urea/ ammonia intoxication (blood levels are often life threatening).

I'm not sure how these results explain the MS-related more subtle cognitive dysfunction in 40-65% of patients, when none have the urea/ammonia intoxication (unless they also have kidney/liver disease). And what about other illnesses which show subtle cognitive dysfunction (not dementia) that are not related to liver/kidney disease?
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Postby willowford » Thu May 26, 2011 5:29 pm

LR1234 wrote:
I have PM'd you Willow.
Thanks again for the replies

Added: My liver has always struggled but strangly I am better MS wise when the enzymes are really high. My liver went back to normal just before this relapse (I stopped a load of supps at my dr's request to see if we could get the liver back to normal). So don't know if it dumped everything into my blood in one go (I also was drinking lots ginger/lemon tea and detoxing) Could this cause a lesion though???


I just PMed you back; I made a comment about CT there but didn't realize you were concerned about it.

Its done all the time (I've seen it save lives in other contexts). There are risks though, especially if you're having lots of CTs in a short period of time. One CT has RARELY causes a problem, usually in people with renal failure. They'll do blood work first to make sure your kidneys are fine and this will further reduce the risk of complications. But if you're worried, for peace of mind, ask the doctor for the risks of the complications when you go in.

Liver issues are sometimes related to meds, especially non-prescription supplements (in these cases, liver function is not monitored) but liver disease is due to other reasons normally. Not sure about your case. Could it have been any meds? Or something you took for detox (affects liver)? The relationship between liver enzymes and MS itself (independent on meds, supplements and primary liver disease) is unclear as of yet. They're still working on this issue.

I don't know of any evidence that ginger/lemon tea increase risk of lesions. The relationship between MS and diet in general is also questionable/ not well established (except vitamin D).

Good luck!
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Re: CT scan radiation

Postby NHE » Thu May 26, 2011 6:07 pm

willowford wrote:I just PMed you back; I made a comment about CT there but didn't realize you were concerned about it.

Its done all the time (I've seen it save lives in other contexts). There are risks though, especially if you're having lots of CTs in a short period of time. One CT has RARELY causes a problem, usually in people with renal failure. They'll do blood work first to make sure your kidneys are fine and this will further reduce the risk of complications. But if you're worried, for peace of mind, ask the doctor for the risks of the complications when you go in.


Dr. Sclafani has discussed the radiation levels experienced for different types of scanning, e.g., venogram, CT, standard x-ray. From the numbers he's given for a chest CT, 8 mSy, I've calculated that this would be the equivalent of 272 standard chest x-rays. There is a risk associated with CT scans. The questions that need to be addressed are if the risk is worth the benefit and if there is an alternative that can provide the same level of information with less risk.


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Last edited by NHE on Thu May 26, 2011 6:19 pm, edited 1 time in total.
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Re: CT Alternatives

Postby NHE » Thu May 26, 2011 6:16 pm

LR1234 wrote:I was wondering whether it was a stroke or something due to my clotted veins but the dr's assure me its not. I am having a CT scan (at my request) to see how the blood is flowing. Slightly worried about the CT radiation level for brain/neck and chest (to include azygous)
My Dr says MRV in this situation would not be sufficient.


Would a Haacke protocol MRV work as an alternative? The information for the scan should be available. I recall seeing it posted to the forums. If you can't find it, then you can contact Dr. Haacke directly from the info at his site, http://www.mrimaging.com/category.71.html .


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Re: CT scan radiation

Postby willowford » Thu May 26, 2011 6:18 pm

NHE wrote:
Dr. Sclafani has discussed the radiation levels experienced for different types of scanning, e.g., venogram, CT, standard x-ray. From the numbers he's given for a chest CT, 8 mSy, and I've calculated that this would be the equivalent of 272 standard chest x-rays. There is a risk associated with CT scans. The questions that need to be addressed are if the risk is worth the benefit and if there is an alternative that can provide the same level of information with less risk.


NHE


Great link - provides info on all the imaging modalities. I've heard docs explain that one x-ray has ABOUT the same exposure as flying across the country once, which is a good analogy. (could mean that one CT is approximately equivalent to 277 times! Hence the concern for flight attendants and pilots who could do this in a year).
CT is definitely up there in terms of risk, which is why its not routinely used unless they're looking for very serious conditions where the benefits outweigh the risks.

According to the post " A head CT scan is 2 mSy, a chest CT 8mSy. Annual allowable occupation dose limit is 50 mSy."

So definitely having 25 CTs in a year put one at a very high risk.
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Re: CT scan radiation

Postby NHE » Thu May 26, 2011 6:24 pm

willowford wrote:Great link - provides info on all the imaging modalities. I've heard docs explain that one x-ray has ABOUT the same exposure as flying across the country once, which is a good analogy. (could mean that one CT is approximately equivalent to 277 times! Hence the concern for flight attendants and pilots who could do this in a year).
CT is definitely up there in terms of risk, which is why its not routinely used unless they're looking for very serious conditions where the benefits outweigh the risks.

According to the post " A head CT scan is 2 mSy, a chest CT 8mSy. Annual allowable occupation dose limit is 50 mSy."

So definitely having 25 CTs in a year put one at a very high risk.


It seems to depend on the type of CT, e.g., head vs. chest. If you count chest CTs, then 6 scans puts you at the annual allowable occupation dose limit.


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