Neurologist Appointment This Morning

[jamilea]

Hi Guys,

At this morning's appointment, an attending Neurologist came in along with the guy I've been going to who is a resident. She said that of the 9 (2 old and 7 new) lesions in my brain, there is only one that is specific for MS. It's in the juxtacortical. And there is only one lesion in my spinal cord that is seen I think she said in both views. There was another questionable bright spot but was only seen from one view and not another so it, "doesn't count" or something like that. Err, wait. Maybe she said since there aren't two, it doesn't count as an MS diagnosis yet. I think she said the questionable bright spot could've been an artifact from motion.

She said that the spinal cord lesion is in just the right spot to explain the weakness on my left side. She says she feels that I may be in the section of the McDonald criteria that says 1 clinical attack with objective clinical evidence of 2 or more lesions.

They want to see me back in two weeks to discuss a plan. She mentioned the possibility of CIS as well as said, "You could go on to develop MS. We don't know." She mentioned a drug that I could possibly start on. I can't remember the name of it. Something about interferon. It was all so overwhelming.

My main questions are:

1. Do you think I'm on the right track now?
2. Does the Neurologist seem good or should I visit a specialist to get a second opinion before taking anything they want to give me?
3. It sounded like she was saying that the symptoms I experience (once mayyyybe twice a year, especially in the Summer months) are an after effect of the first attack. Is that what happens?

[jamilea]

I was just going through some old posts here to print out and show them all that I was experiencing back then compared to now and I found this from an old MRI:

"L arm and facial numbness for 2 months. There are a few tiny foci of deep white matter signal change. Largest is in the left mid centrum semiovale measuring 2.5 mm in max dimension. Largest focus on the right is right posterotemporal white matter measuring 3 mm in max dimension. There is immediate paraventricular signal change which at this time is non-specific. Major arterial vascular structures at the base of the brain and sagittal sinus demonstrates signal flow voids. There is asymmetric signal change in the right pterygoid fossa with clear abnormal enhancement. There is asymmetric pneumatization of the upper portion of the left sphenoid sinus. At this time, the white matter signal change are too small to characterize as multiple sclerosis plaques. They are under 5 mm in size."

That says there was a periventricular signal change. Does that mean a lesion was there back then? I should get those records transferred from MD for them. The Neurologists I'm seeing now are Kaiser. Shouldn't they be able to get those on their own or do I have to do something?

[jamilea]

And how can they think a possible CIS when we haven't gone over what I've experienced in the 6 years in between seeing any doctors after the nightmare I went through in 2010? They only wanted to talk about what happened in 2010.

Ugh, sorry. I just wanted to be at a definitive answer so badly today.

[jreagan70]

She says she feels that I may be in the section of the McDonald criteria that says 1 clinical attack with objective clinical evidence of 2 or more lesions.

Technically, there isn't such a section in the McDonald criteria. The McDonald criteria for clinically definite MS count attacks -- they don't have categories for 1 clinical attack vs. 1 historical/patient-reported attack. The only thing the criteria recognize at that point is that there's been 1 attack.

For clinically definite MS, the McDonald criteria don't require that both of the required 2 attacks be clinical. The McDonald criteria allow 1 of the attacks to be historical and patient reported, as long as it meets the definition of an attack. So if your neuro is calling your status CIS because she's disqualifying a historical/patient reported attack, then she's misinterpreting the McDonald criteria.

If you have 1 historical or self-reported episode that meets the definition of an MS attack, in addition to what your neurologist considers to be 1 clinical attack, you meet the criterion for 2 MS attacks.

It sounds like your neuro considers your spinal cord lesion to be characteristic of MS. 1 typical spinal cord lesion plus 1 characteristic brain lesion meets the criterion for dissemination in space.

Old lesions plus new lesions should meet the criterion for dissemination in time. However, if your neuro isn't counting the new lesions as being typical of MS, then she may not consider that the new lesions meet the criterion for time. A different doctor might not discount them, considering that you have two lesions that are characteristic of MS.

I don't remember if you had gadolineum contrast and enhancing lesions on your MRI. If you had even one enhancing lesion and one old, nonenhancing lesion, it would meet the criterion for dissemination in space.

2 characteristic attacks, and characteristic lesions showing dissemination in space and dissemination in time meet all the criteria for clinically definite MS.

Your task now is to get your neuros to recognize all of the contributing factors -- if they're truly there -- not just the ones they want to see.

Your previous MRIs and neurology records can certainly help support the criteria. You would do best to get copies of your earlier records. You have the most motivation to get them, so it might be better for you to request them yourself. And it would also be a good idea for you to have your own copies of your MRIs and records so you can hand-carry them to your appointments. That way you don't have to depend on someone else requesting or delivering your records. You'll have them with you.

It's always a good idea to get a second opinion about a chronic medical condition. It might be a little trickier at Kaiser because you might have to go to a different medical center than the one you're used to going to to find a neuro who has more interest or experience with MS than the general neuros (especially residents). Doctors who practice in the same center tend to have the same viewpoints on the diseases they treat in order for them all to get along. A different opinion may have to be found at a different medical center.

When it comes to treatment medications, the real choice is whether you want to start with a med with a higher statistical chance of success at limiting relapses, lesions and progression but a greater chance of serious side effects, or a med that has a lower chance of serious side effects but also a statistically lower rate of success (the interferons are in the latter category). After that it doesn't really matter which med you start on because everyone reacts to the meds differently and you have to start somewhere to see what happens.

It sounds like you're on the right track. Your next step would be to get your neuro to give you a believable explanation for why your earlier experiences don't count as evidence of a historical attack, and why new lesions don't count as dissemination in time. I'd be interested in hearing her explanation, because it doesn't sound like she has a valid one.

[jamilea]

jreagan, thanks for your help.

I did have with and without contrast on recent and previous MRIs. I told her that they did a c spine MRI in 2010 and there was nothing there. She says they could've missed the lesion that's there now so I'll have to get my previous records so they can take a look. I had it written down to ask where each of the 9 are located exactly so that I had that for myself. At the end, I made the decision not to ask because we were already feeling overwhelmed and I didn't want to Google all day with knowing. The more they said, the more questions I had and my original questions got drowned out pretty much.

Also, she said the lesions in my brain are new. Of the 9, I'm not sure which are new or if the old ones are still present. I tried to ask as many questions as I could, but I only got about 15 minutes with her at the end of my appointment with the resident. I did ask her if there is only one specific for MS, then what in the heck caused the other 8. She said she doesn't know.

I think she was counting my first attack in 2010 as an attack because that's all she wanted to talk about before she mentioned CIS. My husband interrupted her at some point and said, now hold on. That was six years ago that she had that attack. Since I've been with her for five years, she has had a few really bad episodes. He went on to explain the pain in my legs, severe fatigue, weakness on my left side, etc that I experience. She said that those things aren't considered an attack with MS.

He said well then what causes that? She said it could be a number of things, but that MS attacks aren't fleeting. I think she misunderstood me when I told her that I do have some fleeting symptoms, but those aren't it. Then later, she said that those things are an after effect of the first attack. I didn't realize that until we left and my husband was frustrated wondering why she had all focus on 2010. It takes me a bit to process things and I don't think of things to say until later.

It seems something may be being lost in translation in the appointments because I don't feel they've gotten a clear history since they've only been curious about 2010, but I could've done a better job at asserting myself.

In two weeks when I go back, I'm gonna talk about that and make sure it's addressed no matter how much anxiety I feel about it. I'm gonna write down all of this stuff again so I don't forget.

Anyway, I feel a bit more confident after this last appointment mainly because I'm starting to understand things a little more. Thanks again for your help.

How do I know what is an attack and what isn't? I see differing opinions online.

[jamilea]

The Neurologist called me yesterday to ask how I was feeling, to request that I please make the next appoint soon, and to tell me that he and the attending Neurologist will be taking my case to their MS specialist next week. I'm very happy about that.

I was able to express to him on the phone what I wasn't able to in last appointment so that at least, if nothing else, he understands that I want it addressed at the next appointment. I told him that I want them to look at everything, not just 2010. I also told him that I would like to be privy to their discussions about my case. It would be very nice if my appointment did not just consist of their questions. I have questions too and want to have a more communicative/interactive process.

I found out from him that the drug the attending wanted me to start on is called Extavia. The side effects look awful. I may look into the option of trying a product with CBDs to assist with that.

[Kimba22]

How do I know what is an attack and what isn't? I see differing opinions online.

Hi jamilea,

Sorry to hear you are still awaiting a definitive diagnosis. An exacerbation of MS (also known as a relapse, attack or flare-up) causes new symptoms or the worsening of old symptoms.

To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. Most exacerbations last from a few days to several weeks or even months.

Exacerbations (relapses) are caused by inflammation in the central nervous system (CNS). The inflammation damages the myelin which slows or disrupts the transmission of nerve impulses and causes the symptoms of MS.

In the most common disease course in MS — called relapsing-remitting MS — clearly defined acute exacerbations are followed by remissions as the inflammatory process gradually comes to an end. Going into remission doesn’t necessarily mean that the symptoms disappear totally — some people will return to feeling exactly as they did before the exacerbation began, while others may find themselves left with some ongoing symptoms. Read more here: http://www.nationalmssociety.org/Tre...aging-Relapses

With your MRI, when contrast (gadolinium) is used, a lesion will only "light up" if you have active inflammation going on.

Criteria for a diagnosis of MS

In order to make a diagnosis of MS, the physician must:

Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves (dissemination in space) AND

Find evidence that the damage occurred at least one month apart (dissemination in time) AND

Rule out all other possible diagnoses

The Revised McDonald Criteria, published In 2010 by the International Panel on the Diagnosis of Multiple Sclerosis, include specific guidelines for using MRI, visual evoked potentials (VEP) and cerebrospinal fluid analysis to speed the diagnostic process. These tests can be used to look for a second area of damage in a person who has experienced only one attack (also called a relapse or an exacerbation) of MS-like symptoms — referred to as clinically-isolated syndrome (CIS). A person with CIS may or may not go on to develop MS. Extavia is one of several disease modifying drugs approved by the FDA to treat both. Others are Avonex, Betaseron, Copaxone, and Glatopa.

McDonald Criteria: http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

Clinically Isolated Syndrome: http://www.nationalmssociety.org/Wha...Syndrome-(CIS)

More info that might help you: http://www.nationalmssociety.org/Symptoms-Diagnosis

I'm gonna write down all of this stuff again so I don't forget.

Always a good idea! I have to do the same thing and check it off after it was addressed, because I've actually forgotten to ask something on my list before! I know there's a lot of information here to digest, and it took me awhile before I really understood it. It is overwhelming. But I hope this might give you a start at better understanding MS and CIS.

Good luck at your next appointment!

[jamilea]

Thank you Kimba, I appreciate that. I know others have explained those things to me before. You're right, it is a lot to take in. I'm barely starting to understand it, now this year, for the first time it seems like.

Do you have any idea what else can cause a lesion in the juxtacortical area aside from MS? I've been trying to search for that online, but only MS stuff comes up in Google.

[Kimba22]

Thank you Kimba, I appreciate that. I know others have explained those things to me before. You're right, it is a lot to take in. I'm barely starting to understand it, now this year, for the first time it seems like.

Hi Jamilea,

Your welcome. It took me several years to slowly digest this stuff before I finally understood it. And I'm still learning ...

Do you have any idea what else can cause a lesion in the juxtacortical area aside from MS?

Some other possibilities are migraines, Sjrogren's Disease, and Susac Syndrome.

[jamilea]

Kimba, thank you again for your responses. What can cause a c spine lesion? I asked them if the spinal lesion could've been caused by my car accident. I was rear ended at the end of May. My car costed $8K to have fixed by the other party's insurance company. I even blacked out, was diagnosed with a concussion and whiplash. My seatbelt was completely discharged and I was pinned to my seat. The attending Neurologist right away said, "Nope. No. That didn't cause a spinal lesion." But, can't they be caused by trauma to the neck?

I guess I'm trying to figure out if anything else can cause the 1 juxtacortical lesion, the other 8 lesions (I don't know where they are but they said not specific for MS) and the spinal lesion. Maybe there are separate less serious reasons for all of that?

Maybe there is no point in that line of thinking? haha

Anyway. I appreciate your replies. Thanks so much again and I hope you have a good Sunday evening

[jreagan70]

Hi jamilea:

I agree with you that there are things being lost in translation.

Also, she said the lesions in my brain are new.

It isn't clear what your neuro means by "new." New as compared to what? Without a previous MRI to compare to, the only way your neuro could know that the brain lesions are "new" is for ALL of them to have enhanced with contrast on your recent MRI. Lesions enhance for about 6 weeks. But you didn't say anything about any of your brain lesions enhancing. So that's a piece of information that could explain your neuro's line of thinking.

Your MRIs provide critical information for your neuro and for you. It would be a good idea for you to get a copy of your 2010 MRIs and the radiology report ASAP and take them with you to your next neuro appointment. It would also be enormously helpful for you to get a copies of your recent Kaiser MRIs and the radiology report for yourself 1) so you know what your neuro is referring to that explains her line of thinking, and 2) for completeness of your neurological history.

Based on what you've told us so far, it seems like your MRIs already establish the required dissemination in time and dissemination in space. But in order for that to be clear, or proved incorrect, your neuro needs your 2010 MRIs.

I think she was counting my first attack in 2010 as an attack because that's all she wanted to talk about before she mentioned CIS. My husband interrupted her at some point and said, now hold on. That was six years ago that she had that attack. Since I've been with her for five years, she has had a few really bad episodes. He went on to explain the pain in my legs, severe fatigue, weakness on my left side, etc that I experience. She said that those things aren't considered an attack with MS.

Based on the way your husband described them, no, they aren't. There's a critical part of the definition of an "attack" that's frequently left out. This is the definition of an attack (relapse, exacerbation, flare) directly from the journal article that announced the 2010 revision of the McDonald diagnostic criteria (http://onlinelibrary.wiley.com/doi/1...a.22366/full):

An attack (relapse, exacerbation) is defined as patient-reported or objectively observed events typical of an acute inflammatory demyelinating event of the CNS [central nervous system], current of historical, with duration of at least 24 hours, in the absence of fever or infection. It should be documented by contemporaneous neurological examination, but some historical with symptoms and evolution characteristic for MS, but for which no objective neurological findings are documented, can provide reasonable evidence of a prior demyelinating event.

An attack isn't just the onset of worsening of just any symptoms, it's a clearly defined event that consists of the sudden onset or worsening of symptoms that are typical of an acute inflammatory demyelinating event of the CNS.

Pain and fatigue are nonspecific. So even though they might be symptoms that someone with MS can have, they can occur in the absence of inflammatory demyelination, and don't meet the criterion for symptoms that are typical of an inflammatory demyelinating event. That's why they don't count as an attack. Weakness can also be nonspecific, and could be why your neuro isn't counting that as an attack, either.

These are examples of what your neuro is looking for as a patient-reported, historical attack after 2010: a painful eye and blurry vision that lasted for 3 weeks then got somewhat or completely better, loss of bladder control for a month that got somewhat or completely better, loss of pain and temperature sensation in a leg that lasted for 3 or 4 weeks; inability to grip a cup 2 or 3 weeks.

If you can think of specific events that are specific to the type the correspond to inflammatory, demelinating events, tell your neuro at your next visit. If not, that's OK, too. Your 2010 MRIs can fill in some information.

I had it written down to ask where each of the 9 are located exactly so that I had that for myself.

For someone who has anxiety, that may not be a good idea. It can give you yet another thing to obsess about that really doesn't make any difference to you day-to-day life. In the brain, there is so much interconnectivity that there may not be a one-to-one correspondence to where a lesion is and what symptoms a person has. Becoming overly interested in every detail may not be healthy for you.

It's important to know the general locations of lesions to see if they meet the McDonald criteria for lesions in at least 2 out of 4 of these locations in the CNS: periventricular, juxtacortical, infratentorial, spinal cord. It appears that you already meet that criterion with a juxtacortical lesion and a spinal cord lesion. If you're going to obsess about exactly where every lesion is and what effect it might have on every single last symptom you have, you may be better of not knowing.

Do you have any idea what else can cause a lesion in the juxtacortical area aside from MS? I've been trying to search for that online, but only MS stuff comes up in Google.

There are many things that can cause a lesion there: trauma, ischemic or hemorrhagic stroke, poisoning, infection (bacterial, viral, fungal), inflammation from infection, auto-immune inflammation, small-scale ischemia from things like diabetes or the same things that cause large-scale strokes, and migraine (which includes an ischemic component).

One of the criteria for a diagnosis of MS is that all other possibilities must be ruled out. Your history already rules some things out, the appearance of the lesions on your MRIs rules a lot of things out, and blood testing and possible other tests rule things out during an MS workup.

This is another area where it probably isn't productive for you to go down a list of 100 different possibilities when, say, 95 aren't even in the running because they've already been ruled out by lack of history or lack of supporting evidence. Your neuro already has a pretty good idea of what's already been ruled out.

If everything else already has been ruled out, there still must be evidence that supports MS in order for a diagnosis to be made. You already have at least 1 brain lesion that's typical of MS and apparently 1 spinal cord lesion that's typical of MS. Your neuro is already considering the event(s) of 2010 to be typical of acute inflammatory demyelination. Your 2010 MRIs may be enough to move you from CIS to clinically definite MS, and it's possible that -- if you can identify another characteristic event since then -- you may meet the criterion for 2 events that could move you from CIS to MS.

[jamilea]

Thank you jreagan. That makes so much sense to me.

They do have a CD of brain angio and MRI from 2010 showing 2 non specific lesions as well as the lab reports. The very first one taken in February of that year at the hospital before I got health insurance at the new job I had. I sent for that stuff like a year ago.

The only things they don't have are from that year with Kaiser when a 2nd MRI was done that same year in April I think it was. As far as I can remember from my post history here, that one showed 2 more lesions; still non specific. I think that one was done after I lost balance and fell down the stairs.

The other thing done that year, possibly during that same MRI or later, was the MRI of my c spine which showed no lesions (which the current attending neuro said is possible that it was missed so she will want to see that).

I just emailed my Kaiser member services here in Southern California about those records. They replied with a phone number in MD that I can call to get those.

I'll let you guys know what happens. Thanks again