Neuro looking at possible MS?

[mariedc]

Have 20 year old DD with longstanding problems of various sorts. Doctors have history of passing her to other doctors.  She has new PCP who referred her to a new neurologist and there seemed to be a mutual clicking with this one.  He understood her concerns about having been passed around so many times and said he'd stand by her, which she found very reassuring. He is ordering tests that she's never had done before and from looking them up it looks like he's considering MS.  Have a number of questions. (Note: A recent brain scan for reappearing epilepsy didn't show plaques and the last neuro we saw said she definitely thought she didn't have MS and promptly passed her off to a a neuro who has made it clear she will deal only with epilepsy.)  

Other neuros have found hyperreflexia at knees and clonus in ankles but he couldn't find any--is this something that could come and go with MS?  Same with spasticity--two neuros last year found her spastic, but none this year.  All very confusing.  In any case, this neuro was interested in: reappearance of seizures two months ago after four years med and seizure free, inability to lift right side of mouth in wide smile test, and slight head ticking on right side. Also, he put tuning fork on chin and then next to ear and asked which sounded louder--she got it right on the left ear, but not the right ear.  He was interested that the sleep study her dentist ordered showed moderate central sleep apnea (dentist was expecting obstructive).  Her listened to her distress at a recent symptom of the last couple of weeks--once or twice a day she realizes she has urinated on herself without knowing it.  

He ordered an EEG, VEP, BAER and dysautonomia testing.  After looking this up am wondering why not SSEP as well.  Does this all sound like he is looking into a possible MS dx?  

[bagheesmom]

CAN BE

[bagheesmom]

  I really want to throw my cents in here. You said one Dr stated there was a cyst on thoracic spine and another stated it was a fistula? I have to strongly reccommend that your dd get copies of her tests, MRIs X-rays and so on.
   I have a Chiari malformation and didn't know until I read it on a report myself.
    A Syrnx or Syringomylia  are often found with my condition and usually require treatment.
  You are waiting until February anyhow you could do a little investigating yourself. Sometimes things Drs see as insignificant can't be issues for us. Just a thought

[HVAC]

I am sorry she has to wait until Feb. There is a shortage of MS Specialists in the country. I had to wait 8 moths for my first appointment with my current doctor and I was diagnosed with MS. Things usually go slow with Neurologist. To them six months is a short time to wait. I had appointments every six months when I was being diagnosed. I thought I was being ignored until I understood how Neurologists work. Neurologists are usually not great communicators. They are brainy. I have learned to ask what every test means even reflexes. My Neurologist just assumes you know what he is doing when he does reflexes and such. I have to ask him to explain things to me in English not medicaleze.

Alex

[mariedc]

Kyle,

What great explanations! She does have an appointment with best MS doctor in area--we made it in July for earliest possible date: Feb 12 of next year!  

But she continues to struggle with daily living so I haven't thought standing still doing nothing until February was a real option. But you are right--this leads to too many doctors.  We just saw the orthopedist the neuro referred her to and he said basically nothing to do with him, she should work with the neuro and a rheumatologist.  Yet another doctor.  

On the LP they did do a Lyme test and she was negative; negative as well for a number of others things like West Nile virus. Too bad they couldn't have tested the two main things they were supposed to do.  Apparently the olligoclonal bands and IGG were listed last on the scrip so they were not prioritized.  Yet another thing to look at for when overseeing one's own medical care!

[kwarendorf]

Hi Marie ,

There sure seem to be a lot of doctors involved :-)

"She had LP last year to look for the bands and IGG, but they ran out of fluid and these were the only two tests that were not done. "

RE: MS these are the only two that really matter :-)

Double vision can be either monocular or binocular. Monocular double vision is the result of a problem with the eyes themselves. Binocular double vision is the result of a problem with nerves/muscles that control the eyes. If I have binocular double vision, and I cover either eye, the double vision clears. In monocular, if I cover the the affected eye the problem clears. If I cover the unaffected eye the problem persists. MS can result in either.

The MRIs for MS are pretty specific. They use finer slices than other MRIs. Reading them also requires a trained eye. An orthopedic doc is not likely to recognize a demyelinating plaque. Mine didn't :-)

The only way you are going to rule MS in or out is to see a neurologist who specializes in MS. You may be asked to get a new, complete MS protocol series of MRIs (Brain, c-spine, t-spine with and without contrast) blood tests to rule out mimics like Lyme disease and an LP if necessary.

In addition to having a trained eye see the MRIs, you and DD will benefit from a thorough clinical exam conducted by someone who knows the little MS tells a general neurologist might miss. MS is first and foremost a clinical diagnosis.

Kyle

[mariedc]

Thanks for the responses.  She had LP last year to look for the bands and IGG, but they ran out of fluid and these were the only two tests that were not done.  (Annoying--because of her age they did manage to find enough fluid to run all the STD items, which could have been done just as well with blood.) She is willing to have another LP to lay to rest one way or another the MS question.  

I thought the neuro was perhaps being conservative by doing less invasive tests first before re-ordering LP.  He may have ordered the VEP because she told him she had double vision when she reads but could manage by closing one eye.

She had a brain MRI for the epilepsy in September--they told me it was clear in terms of the epilepsy but I don't have the report and don't know if it was done with contrast or not.  Don't know if the MRI would have been any differently if the instruction were to look for signs of demyelineation.

A year and a half ago she had complete spinal MRI--they said it was clear, but a sports medicine doctor looked at it later and found a cyst like thing on the thoracic spine and made the radiologist change the report.  One neuro who looked at the CD thought it was nothing, but another said it might be a spinal fistula.  

She has chronic leg, knee, and back pain and sometimes walks with a cane--something on the thoracic spine could be an explanation I suppose and perhaps could shed light on the urination thing as well.  The neuro found a pain spot on the thoracic spine and ordered an XRay, a pretty conservative approach that I can't fault , and referred her to an orthopedist.  I've thought maybe an MRI of the throracic spine could lay to rest this issue as well but am reluctant to ask for an expensive test (insurance would pick up, but I think doctors might still balk.)

[kwarendorf]

Hi Marie - Welcome you our little lesion rich environment :-)

There is very little about MS that can be stated with 100% certainty.

I agree with Dennis. The list of tests ordered by the new neurologist are not standard MS tests. The one exception would be the VEP. It is often ordered as MS can attack the optic nerve.

I did not see any mention of MRI, LP or blood work. These are the usual suspects when it comes to MS testing. Has DD had any of these?

The reflex thing can come and go, as can anything else associated with MS. Brisk lower leg reflexes are caused by lesions in the spine, rather than the brain. If these lesions are inflamed the brisk reflexes will manifest. If they are not inflamed, and there is no permanent damage, the reflexes may not show up. The lesions can also be caused by something other than MS.

Seizures are pretty uncommon with MS. They do occur but don't make the top 10 symptom list. If DD has a history of seizures it would make sense for neuros to continue to look there for answers.

Kyle

[Sailorsong]

MS symptoms can come and go depending on a number of factors such as disease activity, level of fatigue, and even how hot it is. For many years my Neuros never saw my foot drop symptom. But a couple of years ago I happened to have an appointment on a very hot day and my Neuro finally saw my very pronounced foot drop and promptly order an AFO for it.

From what you wrote about the last exam and the tests ordered it doesn't sound like this Neuro is testing for MS per se, but just what he saw during the exam and patient history. This is what I would expect from a first visit to a Neuro (checking into more likely problems).

The BAER test is due to the hearing test he did. The EEG and VEP is for the history of seizures. He probably didn't order the SSEP since there was no indication of sensory problems in the arms or legs.


Dennis