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883197 tn?1243122780

Questionable MS? Any Advice would be appreciated!

Hi Everyone! My name is Holly, I just joined because I have been seeing a Neuro and am starting to go through some tests (again! UGH) Hopefully some of you can shed some light or similar experiences with me so I know what to talk to my MD about. Thanks a bunch in advance!

Ok, back in 2001, I started getting right sided numbness, not tingling, just "dead" numb. Nothing hurt, it wasn't painful. My face, head, shoulder, arm body, hip, leg, etc (The ENTIRE right side) Went to Boston and spoke to an MS specialist (I thought Boston was supposed to have the best, however, I got the flake! Couldn't even do an LP on me, told me I had scholiosis! Yeah, real winner! LOL Didn't go back to him!) Nothing came from that appointment, then I found a MD close to home, He did an MRI and LP. Nothing of substance showed. Nothing in LP, very small lesion (only one) on MRI. I had lived with the numbness for a good 6+ months at this time and decided just to "deal" with it and didn't continue testing (Yeah I know, young and stupid! LOL)

Now, in 2009, I am getting some more symptoms. Again, nothing is painful, just numb! The right-sided numbness has pretty much gone away. Sometimes it comes back but not nearly as bad. (A couple times a year) Normally it is just small portions of my back and my face. Now I am getting numbness that sets in within seconds in my arms and all fingers. Sometimes tingly, but mostly dead type feeling. Normally happens when I am doing something with them, washing dishes, talking on the phone, writing a letter, etc. My right let has started the numbness also. (Mostly while I sit on the couch or while driving, gets kinda scary during the driving!) My Neuro has scheduled a couple tests, another MRI, a Nerve Conduction Velocities, A Visual Evoked Potential, a Brainstem Auditory Evoked Potential, a Somatosensory Evoked Potential - Upper and Lower.

What is he looking for, have any of you gone through any of this, and what should I ask the doctor when I see him in May? Again, any advice or opinions would be greatly appreciated!
16 Responses
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883197 tn?1243122780
Honestly PastorDan that sounds like they didn't have the sensors in the right areas. There is supposed to be a wave. In MS it is just delayed. I would look into having that redone.
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751951 tn?1406632863
Okay, my SSEP report said something stupid, like "no reproducible waveforms could be detected," referring to all the sensors from the knees upward, all the way.  This must have been some kind of equipment failure on their part, I presume?  I'm having trouble envisioning any other way that my feet and toes could actually be in communication with my brain (I can move them as well as ever, and I feel it when I do), but their long hard buzzzzzap!!! not transmit to any point on the path where thay'd want to read it.
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847433 tn?1243009652
Quix,
I was wondering if I could ask you a question regarding this post.  Ive had alot of radicular pain in my arms today from my neck and the percocet have further fogged my brain.  So im really not absorbing this post about evoked potentials.

I was told by one of the md's on the forum to maybe have a SSEP I believe to r/o if the "event" that I had regarding the severe weakness in my lower extremities  and paresthesias in my foot, groin, buttock and thigh were related to my injuries in my neck.  The abbreviated version of the cervical MRI is:

DDD, at C5/6 and C6/7 with spondylitic ridges/disc herniations at each level that result in compression of the left C6 and C7 nerve roots as well as mild spinal cord compression. at C5/6.

This "event" as I call it was very traumatic and dramatic and was the most frightening thing that ever happened to me, I had some vague symptoms and LE paresthesias LE and then basically overnight couldnt hold myself up.  It has taken like almost 2 months to get back to normal, now my legs are working and I have a little residual paresthesias in my legs.

Would this SSEP for the cervical area be able to determine if my LE problems were stemming from the cord compression in my neck.  My surgeons are hesitant to believe that whats going on in my neck could possibly cause the problems I had in my LE.  I am scared to death this will come back and maybe worse who knows.  I was foolish for not going to the hospital when it happened.  The neurologist I saw called me "stupid" like 4 times.  One more "stupid" and I was just about going to knock her out.  She was an a-hole, I think i'll be going to another.

thanks for any input.
missy
sorry if this doesnt make complete sense, but the percs have done what they do.
hope u feel better from the piglet flu:)
Helpful - 0
883197 tn?1243122780
Thanks for the info. It was very helpful reading what each test actually tests for. When I had the visual EP, the tech stated that the brain waves were not "smooth" hump waves, they seemed a bit choppy, meaning staggering up then staggering down to make the hump. She messed around with the sensors on my head for a bit and retested me 3 to 4 times. Has this happened to you or anyone else?

Also, while she was doing the NCS in the hands I was watching the screen and noticed that in my right hand you saw the electric shock wave going up about 1/2 an inch, then dip down about 1/2 an inch and then just a straight line. I saw it measured at 21. The left hand was fairly similar, the numbers were a bit higher though (can't remember those numbers off the top of my head) I couldn't see the leg numbers since I was lying down on my back then my stomach for those. Do you or anyone else know if this, or what, is a normal wave number for arms and legs? I thought I read online that it should be somewhere between 45 and 65 (Don't quote me on that though)

Also, Quix, thanks for the referral to the MS foundation. I'll be sure to give that a look. I love my Neuro, but if he doesn't find anything on my tests as of my next appointment, May 26th.

Thanks again,
Holly
Helpful - 0
147426 tn?1317265632
This is something else I wrote describing the Sensory Evoked Potentials, the VEP and the Auditory Evoked Potential

The Evoked Potentials have nothing at all to do with the muscles, for general discussion. At the bottom I will describe a MOTOR evoked potential that is sometimes performed.

The Evoked Potential testing in MS is a measurement of a set of SENSORY nerve signals. So instead of measuring a muscle receiving a signal FROM the brain, they measure the nerve signal from a sensory organ TO the brain. The three most common Evoked Potential (EP) tests are the:

1) Visual Evoked Potential (VEP), which measures the signal from the retina of the eye to the visual processing parts of the brain. The signal should arrive with a good wave form and in 100msec. In Optic Neuritis the signal is delayed, but the shape of the wave form received should be normal. This is the EP that is most frequently abnormal in MS. Approximately three quarters of people with MS will have an abnormal VEP AT SOME POINT in their disease course. A normal VEP cannot be used to rule out the diagnosis of MS (contrary to what a few of our neurologists have said!) The VEP may be annoying, but s painless.

2) SomatoSensory (meaning sensation of the body - as opposed to sensation of the internal organs) EP. The SSEP measures the nerve signal from a point of electrical stimulation and checks to see if the signal arrives in the brain. There are surface electrodes placed along the path of the signal so that if there is an interruption of the signal, they can see where the interruption occurs. In cases of MS the signal will be delayed, but the wave should arrive with a good shape. The SSEP is the second most commonly abnormal EP test in MS - I'm unsure of the numbers but it is around 50% or less.

3) Auditory EP (also known as the Brainstem Auditory Response, BAER, and a bunch of other acronyms) In this test the stimulus is a rapid repetition of clicks and the response is picked up by electrodes over the scalp. This test is used to detect deafness in babies and to detect MS lesions involving the auditory nerve (Cranial Nerve VIII) and pathway to the brain.

Finally there is a test called a Motor Evoked Potentials in which a stimulus (either magnetic or electrical) is applied at the scalp and the arrival of the signal at a muscle is measured.

Quix
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147426 tn?1317265632
Hi, and Welocme to the forum.  Sorry I missed you last week.  I had the Piglet Flu variation and Iam trying to climb out of a deep hole.

If I understand your story correctly, you are now having the numbness in both arms and all fingers?  So, your symptoms are no longer just on the right.

With the batch of tests the doctor is running he is trying to document just where along the sensory nerve path the problem is.  In a sensory nerve the signal runs from the nerve ending out in the body (say, a finger) up the arm, shoulder, to the cervical spinal cord and then up through the brain stem then into the brain and ends in the gray matter where you become aware of feeling (or not feeling) something.

Here is something I wrote up describing the Nerve Conduction Velocity test versus the Sensory Evoked Potential.

We always say that an EMG/NCS is done to help rule out MS, but an SSEP is done to help diagnose (rule in) MS. The two tests seem similar and the difference confuses people.

Nerves may travel in only one direction. Those that start in the brain and leave to go out into the body are those that CAUSE something to happen. The easiest to understand are the "motor nerves" that originate in the brain and then proceed to go down into the spinal cord, leave and go to make muscles move. The other type are the nerves that carry information, usually sensation, from out in the body to the brain. These are called the sensory nerves.

The Central Nervous System consists of all of those nerves that are still in the spinal cord, brainstem, and the brain. These are also both sensory nerves and motor nerves. MS is a disease that only involves the Central Nervous System.

When the Nerve Conduction Study is done, it is to diagnose a "Peripheral" neuropathy, that is, a problem in the Peripheral Nervous System (PNS). The PNS is all the nerves that have already exited through the spinal column. These nerves include both motor nerves and sensory nerves.

Let's say that you have pain in your forearm. There is no injury to account for the pain, so the doctor thinks it is nerve (neuropathic) pain. He choses a test to see if he can determine where the damage to the nerve has occurred. One of the first test chosen is the EMG/NCS. The NCS of this test is a Nerve Conduction Study (also known as a Nerve Veocity Study). This is to see if there is a peripheral neuropathy.

For example, if the pain is felt in the forearm, the NCS will stimulate a nerve below the forearm (in the hand or wrist) and measure the velocity of the signal carried by the peripheral nerve as it travels up to the spinal cord.


forearm --> elbow --> upper arm/shoulder--> entry to cord --> cervical spinal cord --> brain.

||----------------------------NCV--------------------------II---------------SSEP-------------------||

    (peripheral nervous system)                         (central nerous system)

A nerve conduction study looks at the sensory signal from the hand -->wrist --> elbow -> shoulder --> spine. When we see a slowing of the signal or a break in the signal at the elbow, we know that the damage has already occurred. So we can say that the nerve damage is below the elbow. The more sites that are monitored the closer we can pinpoint the site of nerve injury. If the sensation travels normally from the finger to the wrist, but then we see that the signal is slowed or absent at the elbow, we know the damage is in the wrist or forearm.

If the signal is fine until the entry point into the cervical spine then we can assume some type of compression as the peripheral nerve emerges from the spinal column.

An SSEP is similar to the NCV but it measures slowing within the spinal cord and finally in the brain. So we would still see a normal signal at the point that the sensory nerve impusle entered the spinal cord. Then we can't measure that particular, exact nerve, but we know what kind of signal to expect as the signal rises in the cord and finally as the sensation is experienced in the brain. Over the brain the test uses electrodes like for an EEG. In fact, an SSEP is like a very localized EEG.

The SSEP measures the velocity of a sensory nerve signal from the point of stimulation to its arrival in the brain. The signal is typically measured at 3 or 4 spots along the way, way from the foot to the hip to the spine to the brain.

If there has been a demyelinating lesion (like in MS) the lesion will be in the spinal cord or the brain. So the first or second measurements will be normal because they are measuring the sensation signal out in the peripheral nerves. If the signal shows that the spot of delayed conduction is in the cord or the brain, then the result is suggest of MS.

In MS the signal is measured both in speed and in it;s particular wave form. If the wave form looks good, but the signal is delayed somewhere in the central nervous system, this suggests MS. If the signal is delayed, but the signal waveform is broken up then it suggests some other kind of damage - not MS.

So the SSEP is fairly specific for MS.

Quix
Helpful - 0
883197 tn?1243122780
Thanks for the comment. Yeah I had the rhythmic twitching also, however, in my right hand, left hand and right leg I could barely feel it, but the tech said it was at a higher level. I don't know, I'm just all confused! LOL
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751951 tn?1406632863
I only had the lower SSEP, so I don't know what the upper is like, but the lower was a constant voltage and frequency.  They started with nothing, and cranked it up until the big toe began rhythmically twitching.  Then they set all the instruments, etc., to time and record, and flipped the switch back on at that higher setting for the test.  During the recording part, it felt very constant.

I have no clue what any numbers might mean, as I haven't seen my results anywhere so far.
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883197 tn?1243122780
Oh forgot to mention, my peaks in my right arm (the one fluctuating) were 21, if that helps anyone.

:D
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883197 tn?1243122780
So I went to all my tests and MRI this past week. Man oh man, I felt like I had just been ran over with a mack truck! Couple of the tests I think I failed on. I questioned the tech and she wouldn't give me any info, but that's not her job to analyize the results.

I had something really weird happen to me though during the test. I was doing the upper SSEP, and during the 500 (x 2) shocks to my right hand it felt like the shocks were varying. Like they fluctuated from soft to hard, slow to fast. After the first ound of 500 I asked the tech if those were supposed to be fluctuating and she told me that it was a steady pulse and strength.

Anyone else have this happen to them?
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751951 tn?1406632863
I'll add a hearty "Amen" to everything written in reply so far.  This is the place, I've found, to get support, and quite often, answers to questions that we wouldn't dream of asking our docs, or for which they too often don't take the time.

With regard to your symptoms, if I readd you correctly, everything has been on the right side of your body, and none of these symptoms have occurred on the left.  This seems a bit odd, but MS is, I am learning, a disease full of oddities.  Still, the one-sidedness of your issues just makes me wonder if there could be a single point at which you have a damaged nerve or a blood flow restriction that affects only one side.  You said your MRI showed only one small lesion.  Was it on the left, perhaps?  Further, one small lesion when you were in your early 20s would, in this preacher's opinion, warrant further inquiry.

It is good to see that your doctor is pursuing a fairly aggressive diagnostic route, evidently ordering numerous tests rather than waiting for the results of a few before deciding whether to pursue others.  If the docs I've seen had taken that approach at Christmas time, I might be a few months into treatment for something, but as things stand, I am still waiting for more reports, and for a diagnosis.

If memory serves me correctly, I described the VEP and SSEP in a recent journal entry.  Click on my name at the top of this post, and you'll get to my profile page.  Journals are at the lower left.  VEP was almost nothing.  SSEP was annoying, but tolerable.  Don't know how I did yet, on either of them.

Welcome to the family.  God bless.
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Avatar universal
Hi Holly,
I don't have any information for you, but I do want to say that you are very fortunate to have a Neuro' who is willing to pay attention to you, and order all of these really important informational tests!  We are not all that fortunate to find a "good doctor."  I recently had an awful experience with a Neuro...so "bravo!!" to your doctor for doing his job. I hope that these tests will bring you the answers that you are looking for. My best to you.  DeniseA.
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572651 tn?1530999357
hi HH and welcome to the MS forum at MedHelp.  Weekends are kind of slow around here - everyone hopefully is out enjoying life! - so you may not get much of a response until sunday night.  I can't venture a guess what your neuro is thinking, other than looking at neurological responses.

Welcome again and I hope we will see you around,
Lulu
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739070 tn?1338603402
Hi welcome! You've come to the right place. This forum is filled with warm and caring people.   I don't necessarily have all the answers to your questions as I am relatively new here and recently diagnosed but others will come along with more answers .

It sounds as though your neuro is covering all the bases and ordering the full battery of testing that is usually  done. For more information you can go to the yellow icon at the upper right hand corner of the page where you will find the Health pages. These pages contain a wealth of information and might be useful in answering some of your questions.

Feel free to ask any questions you'd like and most likely someone will have the answer or can head you in the right direction.

Welcome again and take care,
Ren
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883197 tn?1243122780
Yep, my memory at it again! LOL Just a quick not, last year a psycologist diagnosed me with Bi-polar type 2 (my emotions can fluctuate minute to minute) and ADHD. I know I have read that depression is one of the symptoms of MS and fatigue is also. If I don't take my adderall for my ADHD I could sleep all day, however this isn't always, 7 times out of 10 I'm tired. Just thought I would add that.
Sorry folks, I promise, I'll try not to add more LOL!

Holly
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883197 tn?1243122780
Oh forgot to mention, my memory has been terrible lately! As you can tell with this second post! LOL Also, I've been having the occasional right sided blurry vision, losing my balance, walking a straight line then somehow the wall jumps out in front of me, seems funny now, but when it happens it isn't! LOL

Everything just seems really odd to me.

Thanks again folks!

Holly
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