Advice Sought- VEP,BAER scheduled-best done when symptomatic or not?

[ocean_8]

Hi All- I'm going through the diagnostic paces for MS; have had brain MRI, MRA, spinal series MRI's,24 hr EEG, lumbar puncture, asstd labs. Next is the VEP and BAER.

I'd really, really appreciate insight as to best time to take these tests:while I'm having a period of time that I'm having cognitive difficulties, or just any time at all they give me the appt?

The EEG was done when I was not having any big cognitive or speech slow downs and showed nothing amiss. My neuro said she realized how hard it is to catch the right moment. But if I'm getting a test I'd at least like to know when to shoot for if possible.

For instance if it tends to capture more when someone is symptomatic I'd rather cancel if I feel fine then do it and catch nothing, and then have insurance deny a future request to repeat the test.


Thanks for any insight anyone can provide.

[Redwings]

I'd really, really appreciate insight as to best time to take these tests:while I'm having a period of time that I'm having cognitive difficulties, or just any time at all they give me the appt?

There are two ways to look at it. One way is that neither the VEP or BAER is a test of cognitive function, so the state of your cognitive function at the time shouldn't make a difference to the test results. The other way is to assume that the state of your cognitive function is an indicator of the state of your sensory functions, so testing your VEP and BAER at the same time might catch a problem when you think it will most likely be evident. The drawbacks to the second approach are that there's no guarantee that vision and hearing will be affected at the same time as cognitive function, and there's no way to predict when you'll have sensory difficulties and/or cognitive difficulties, because symptoms and abilities can change from day to day. If you keep trying to coincide the tests with when you think you might be at your worst, it may never happen.

[ocean_8]

Thanks,Redwing. I have been going in circles on how to approach this so I appreciate your thoughts. Sometimes it seems like I'm more likely to get more symptoms of cognitive slowing,slow or slurred speech and blurry or double vision when I'm very overtired. I know I can't possibly predict when I'll be fine and when I won't though. (too bad!!) And as you pointed out the thing I don't know is whether these symptoms would have any effect on the VEP or BAER tests. I've tried an internet search but haven't found an answer.

I have also wondered about the timing of the other tests I've had- whether or not the results would be different if they're done when symptomatic or not.

Even for the next MRI - I was advised by one neurologist to wait a few more months just to increase the chances of having had enough new episodes that would show up on an MRI. (this was a second opinion neuro because I was feeling unsure about the local neuro I've been seeing) So that would be June. My local neuro wanted me to have it done pretty quickly- if insurance approves it that would be now-April, 3 months after the first one.

I was only mildly symptomatic during my first one, coming off a period when I felt really lousy. For the subsequent spinal series, brain MRA,EEG and spinal tap I was feeling pretty good. I just want to try to have at least some testing done when I'm having problems *if* this makes a difference in the results.

I read certain images fade away in brain MRI's after symptoms recede and it is helpful to have the MRI done within 2 weeks after an episode. Does this sound right, or incorrect? I could be confused- it's been a lot to take in!

Sorry so many questions- I've not had anyone to discuss these things with. I'm so glad to be able to ask all of you!

Thank you!

[MarkLavelle]

I think Redwings [will give you bulls? ] hit the main point: don't expect a correlation between your cognitive state and those two tests. OTOH, I think most would agree that MS sx are often more in evidence when we are overtired. That might imply that a lot of exercise before the tests will show your 'worst case,' but I wouldn't depend on it...

I was advised by one neurologist to wait a few more months just to increase the chances of having had enough new episodes that would show up on an MRI.

I agree that it makes sense to wait at least 6 months for new MRIs. The exception would be if you had a new relapse/attack (with new sx). In that case it would make sense to get an MRI of the most likely area (brain, c-, t-, or l-spine, depending on sx).

I read certain images fade away in brain MRI's after symptoms recede and it is helpful to have the MRI done within 2 weeks after an episode. Does this sound right, or incorrect?

That sounds wrong, to me. Lesions are lesions (including new ones), and will show up on non-contrast MRIs regardless of their age. With contrast, active lesions can be detected, but as I understand it once you've got a large enough lesion it will show up even without gadolinium (contrast).

[ocean_8]

Was timing diagnostic tests with symptoms, now questions about symptoms and relapses

Hi Mark- Thanks so much for working through this point by point with me. It really helps.

You said something I'm wondering about. I feel overall I haven't had a big relapse (IF MS is what I have) anyway, I haven't had a big relapse of many symptoms all at once knocking me down and out since Dec- then a few rough weeks in Feb after the spinal tap.

BUT- I have had some new or changed symptoms and I don't really know how to regard them.

I have had tingling and pins/needles in my fingers and toes intermittently for maybe 1 1/2 yrs, maybe more. But recently I had a huge increase in intensity along with burning with this sensation- but larger areas and so intense I could hardly sleep. It started by getting a sunburn(which is not usual for me and I had so much protection-#70 sunblock, an umbrella, big hat, limited sun exposure. I knew I needed to be careful because I'm on doxycycline and that can increase susceptibility to sunburn but this reaction and sensitivity was *crazy*.)

The easy burn seemed to trigger a worsening of the pins and needles that had resumed just the day or so before I got in the sun. It made my hands, feet, thighs activate with such intense pins and needles and heat I couldn't escape it. I finally got some sleep by putting frozen washcloths on the burning needle-y parts. After that any temperature change- warmth or cool- triggered the tingling needles. Not even sun- just slight warmth-like briefly trying to hold my husband's hand- would trigger a huge leap in temperature and burning in those places- and sometimes nothing obvious would get it going.

But it was only really crazy for a few days, then reducing in intensity and changing to needles triggered by any temp change. Even grocery shopping and briefly reaching into cool case....

But overall, I didn't feel weak, exhausted and non-functional like I had in Feb and Dec and other times prior and I didn't have any big cognitive slow downs or slurry speech.
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QUESTIONS:
So, my first long winded question is: If a symptom morphs into something more or gains intensity- like this did- is it something that can be detected by imaging like an MRI?

-What would show up on an MRI?

-Which symptoms merit calling the neuro who's working on diagnosis? ( I was thinking I should keep a simple log of the symptoms, dates, etc, rather than pestering her. So far I just jotted a few things on the calendar.)

How is a relapse defined? Is it many symptoms coming back at you together?
And do the symptoms need to be bothersome enough to lower your overall functioning for a while- maybe weeks or months to be considered a relapse?

If that is a relapse, then the coming and going of assorted symptoms in between bigger periods of being knocked out of commission is ...what? Just par for the course?
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What I experience is really down and out chunks of time with many symptoms and extreme fatigue, or trickling and shifting of symptoms over time but able to function better than bad times. Seems like there's always some symptom coming or going and a background of lowered cognitive functioning overall.


Cognitive and Speech Slow Downs- QUESTION:

I am confused by the episodes of slow thinking and slow or slurry speech. Sometimes I just get a short lived episode, like today it was maybe 20 mins of noticeable trouble, but before that for an hour or more I could feel my processing slowing down. Laying in bed for an hour really helped. My vision also was off- blurry and more double vision for small near vision like reading on and off today.

Sometimes I am this way for a chunk of a few days going in and out of intensity, but it's more defined episodes that hit, lift slowly, are improved with rest, and dissipate. The episodes are maybe 45 mins-3 hours, but also I may be more vulnerable to these episodes for a few weeks or maybe more than a month, then they won't hit as much. During that time my overall functioning is slower- mental processing, ability to concentrate, can't do more than one thing at a time, word finding issues, etc. So there are acute episodes, but I think they occur in the context of a chapter when lots of functioning is lower.

The second opinion neuro I saw said the episodes of slow thinking and speech problems are not long enough to be MS when I told her each episode lasts from maybe 25 min to 3 hrs. But I didn't think to put it in context of the time frame of weeks of less intense- but more than usual difficulty- surrounding those more difficult moments. I don't know if that matters....or maybe if I have been having TIA's as opposed to the cognitive/speech problems found in MS.

How long do episodes of slowed thinking and speech need to be if they're caused by MS?


Many, many thanks to anyone who is willing to try to help me to understand some of this! I really appreciate it!!

[MarkLavelle]

So, my first long winded question is: If a symptom morphs into something more or gains intensity- like this did- is it something that can be detected by imaging like an MRI?

-What would show up on an MRI?

The definition of an exacerbation (relapse) says "the attack must last at least 24 hours and be separated from the previous attack by at least 30 days." (http://www.nationalmssociety.org/abo...ons/index.aspx)

MRIs can detect (a) the presence of new lesions, and (b) whether any lesions are currently active (that's what the gadolinium/contrast is for).

So an MRI might be used to confirm (or not) that an exacerbation is due to new lesions, but isn't part of that definition of exacerbation.

Just to confuse things, my neuro gave me the impression that "new lesion(s)" is the definition of an exacerbation, and attacks without new lesions are just pseudo-exacerbations. He also said that pseudo-exacerbations can include new or newly intensified sx, even though they come from nerves that had been damaged long ago.

Since the end of the 3 months where paresthesia spread from my feet to my whole skin, 95% of my own sx are continuous and only sensory, with some variation in intensity. Weird feelings wouldn't send me to the neuro, but newly chronic pain or any kind of disability (visual, locomotive, etc.) would rate a call...

My sx are all non-cognitive, so far, so I'm not gonna touch that part.

[ocean_8]

[QUOTE=MarkLavelle;1357295]The definition of an exacerbation (relapse) says "the attack must last at least 24 hours and be separated from the previous attack by at least 30 days." (http://www.nationalmssociety.org/abo...ons/index.aspx)

So the intensified parasthesia, and it's increased surface areas,and new area might be called an exacerbation or relapse, even though other than that I was doing pretty well and it was just a single symptom as opposed to multiple symptoms being reactivated simultaneously? Is what I experienced called an attack?

I've obviously been mixed up; my main focus has really been on the cognitive and speech slowing I think because that's been what has worried me most. The other stuff isn't great, but what finally got me to go to the neuro were the cognitive and speech issues,well in combination with the numb tingling stuff....

MRIs can detect (a) the presence of new lesions, and (b) whether any lesions are currently active (that's what the gadolinium/contrast is for).

So an MRI might be used to confirm (or not) that an exacerbation is due to new lesions, but isn't part of that definition of exacerbation.

Oh- thank you!

Since the end of the 3 months where paresthesia spread from my feet to my whole skin, 95% of my own sx are continuous and only sensory, with some variation in intensity. Weird feelings wouldn't send me to the neuro, but newly chronic pain or any kind of disability (visual, locomotive, etc.) would rate a call...
Your whole skin- yikes! I'm sorry! That is a whole different game than specific areas!

Thanks so much for all of your help, Mark!