Myoclonic spasms have no relationship to MS!!!!!!!

Well I have just returned from my FLAIR MRI which is a followup from the MRI I had some weeks ago.   Part of the result of that MRI is as follows.  
1. There is a small linear focus of altered intensity in the pontine tegmentum in the mid line.
2. There are scant small foci of increased signal intensity in the cerebral hemispheric white matter which are predominantly peripherally distributed although there is a small lesion of the periventricular white matter adjacent to the right temporal horn anteriorly.  ALthough not numerous the distribution and morphology of these white matter hyperintensities is not typical for microvascular ischaemic aetiology.   Demyinlation needs to be excluded.  

The neurologist sent me back for the FLAIR with the request that stated ? MS ? L'hermitte's.

After the FLAIR today I called in to the neurologists rooms and he was kind enough to review my films without the radiologists report.   He dismissed MS outright and said that the lesions were not like MS (even though he mentioned this on the request).  He also told me that the myoclonic spasms that I have been having definitely have no relationship  to MS.   I have what may/or may not be optic neuritis with blurred vision despite having been told by the ophthalmologist (twice) that my eyes are perfect.   I have a referral from him now to an ophth/neurologist.   He told me what I am feeling is not in the eye but coming from my brain.  

This jerking/spasm symptom is quite severe and every time I move in bed my body goes into severe spasms which wake me and my husband.    It is also there during the day but to a much lesser degree. This is about the third such episode of this shaking that I have had over the passed 12 years and the second or third incidence of eye problems.

I have a problem with one foot where I feel like I have walked in something and it is stuck to the bottom of my foot.  The podiatrist made a little pad thing for the sole of my foot but it did nothing.

I am booked for an EEG and other balance and hearing problems in hospital later in the month.     Should I be thinking of another neuro?  

Please don't think that I am trivialising MS by seeking this diagnosis.   I am genuinely concerned about my sight and fear that I may not be getting the treatment that I need.  

Any thoughts on what I have been told today?


P

[Deb61]

Everyone expressed exactly what I would say.  It sounds like the neurologist disagrees with what the radiologist reported unless he's trying to exclude other causes for what appears to be demyelinating lesions besides MS.  

I think this neurologist did jump to conclusions without ruling out MS.  He obviously should not rule out MS until he knows the cause of your vision problems.  

Before the MRI done several weeks ago, is this the first one?  If not, a comparitive study would be nice if the other MRI images are available.  It could be that the dissemination in time criteria hasn't been met in the doctor's mind.  If you do have ON, this would also meet that criteria.  

ON is a difficult diagnosis if the optic nerve looks good on examination.  The trouble is that the optic nerve lesion could be behind the eye.  I think they are hard to spot on MRIs, too.  It's not impossible, then, that you could have ON and it not sow up on MRI or exam.  Have you had a VEP?  If this shows slowing, this would perhaps give evidence of the optic nerve involvement.

Perhaps you could see what this ophthalmologist says before moving on to another neurologist.  If he gives evidence that you have or have had ON, then your doctor will need to consider MS as well as Devic's.  I'd also ask about the VEP if you haven't had one.  Have you had a C-spine or T-spine MRI, also?

Myoclonic jerking can be caused by MS and some other diseases of the CNS.  Here's a great site about them:

http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm#179873160

I think I have at least two types of them - the jerking of muscles when I am sleepy or going to sleep and the palatal spasms that results in this Morse code-like clicking sound in my ears which can be quite annoying when trying to sleep.

Best of wishes,
Deb

[LisaJF]

Rid of the idiot and onto a MS Specialist or some MS Clinic in your area.  

MS Lesions can be small in size, round  and/or oval shape.  Depending on where the lesions hang out -- periventricular, corpus collosum, parietal, juxtacortical, infratentorial, etc. These areas are prime real estate for MS lesions. Mostly around the ventricles and cc. MRI is not always a specific for diagnosing MS. Sometimes they do diagnose people without lesions.  

I'd say listen to the patient, look what is going on, look at the entire picture here instead of LP, MRI and evoked potentials.  

Myoclonus or Dystonia can be related to MS.  Google it.  You'll find enough.

Go to your neuro-ophthalmologist.  Get a new doctor.  Your needs or health are not being addressed at all.

Lisa

[wiggles94]

Hi and welcome.
Sorry for what you are going through - I can relate - and will give you some food for thought.

It sounds like you are getting a lot of testing done, which will help you on your journey to get to the bottom of whatever is going on.

Someone is taking you seriously enough to refer to neuro-op , ask for the testing etc - not sure if this is your neuro, or your regular doc.

Listen very carefully when docs talk - at times I have thought my neuro has said certain things, but when I question him I realize I misunderstood.  So make sure you question your neuro if not clear.  I think for "gray" area patients (I am one) we can be very frustrating to docs who may have big egos - but can't figure us out.  If he is sending you for all this other testing, it sounds like he still thinks MS is on the table - I think sometimes docs say things "this isn't MS" thinking it will help reassure us , and if they don't know for sure - they dont' want to worry us needlessly. BUT  I think it has the opposite effect on someone going through this - AND it's too soon for him to be saying that this is NOT MS -  Do you feel comfortable with your neuro?  

Leave your neuro if you don't trust - one of the most important things to me is that my medical people are listening to me - and have some empathy for what I'm going through.  For my second opinion, I am going to a MS neuro - who I am told is arrogant - but the best- so I don't need his empathy - I need his brain.  ANd I'm glad my neuro warned me ahead of time about his bedside manner - I know what to expect.  My neuro's ego is healthy enough to tell me that he isn't sure about me - and needs someone who he says is smarter than he is as far as MS -  to give second opinion.  I love that about him!

Remember that an MS diagnosis can take a long time if you don't present with typical MS stuff - and you don't want an incorrect dx either - read the health pages at the top of the right hand page.  Lots of good info re MS. Be your own advocate - but don't make any major decisions (such as leaving a doc) if you are upset.  Settle - take a deep breath, and weigh all your options.

Take care and good luck on your journey. There are many wonderful people on this site who understand and are very helpful.
Carol

[RedFlame]

My understanding is that myoclonus and L'Hermittes are both symptoms that can occur with MS.  They also occur with other neurological disorders.

It sounds like your doctor has jumped to conclusions sort of 'off the cuff'.  If you feel that he/she isn't listening, Allot of docs have a slanted view of MS, believing it can only show as 'periventricular ovals' etc.  When a couple of things come up

It's tough when you are in the diagnostic phase.  

Before the advent of the MRI.  Docs did extensive neuro exam and based their diagnoses on that.  

In my opinion, neurologists have become lazy and lack confidence in their own skills.  In the past, a good neuro could actually pinpoint where the lesions were/are.  My suggestion is to move forward for a new doc

Red

[Deb61]

Everyone expressed exactly what I would say.  It sounds like the neurologist disagrees with what the radiologist reported unless he's trying to exclude other causes for what appears to be demyelinating lesions besides MS.  

I think this neurologist did jump to conclusions without ruling out MS.  He obviously should not rule out MS until he knows the cause of your vision problems.  

Before the MRI done several weeks ago, is this the first one?  If not, a comparitive study would be nice if the other MRI images are available.  It could be that the dissemination in time criteria hasn't been met in the doctor's mind.  If you do have ON, this would also meet that criteria.  

ON is a difficult diagnosis if the optic nerve looks good on examination.  The trouble is that the optic nerve lesion could be behind the eye.  I think they are hard to spot on MRIs, too.  It's not impossible, then, that you could have ON and it not sow up on MRI or exam.  Have you had a VEP?  If this shows slowing, this would perhaps give evidence of the optic nerve involvement.

Perhaps you could see what this ophthalmologist says before moving on to another neurologist.  If he gives evidence that you have or have had ON, then your doctor will need to consider MS as well as Devic's.  I'd also ask about the VEP if you haven't had one.  Have you had a C-spine or T-spine MRI, also?

Myoclonic jerking can be caused by MS and some other diseases of the CNS.  Here's a great site about them:

http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm#179873160

I think I have at least two types of them - the jerking of muscles when I am sleepy or going to sleep and the palatal spasms that results in this Morse code-like clicking sound in my ears which can be quite annoying when trying to sleep.

Best of wishes,
Deb

[Sidesteps]

I think I'd be requesting a referral to an MS specialist while still seeing this Neuro. Just get a second opinion, get the ball rolling while getting these tests done.

I also have myoclonus and was told that it is an atypical presentation. I have done my research and think what my first Neuro intended to say was "it's an atypical initial presentation." The MSologist I saw for a consultation early on stated that myoclonus was nothing to be concerned about so I try not to be concerned until they change and then it unsettles me. I have a variety of different types of twitching/jerking.

In further researching, they have NO IDEA what causes myoclonus nor do they know the location of the brain that creates it. They think it comes from the brain stem and some forms may be caused my abnormalities in the cerebral cortex vacinity but they are unsure; so I find it interesting some doctor's can say it's not a symptom in MS when a lesion can interrupt this part. Annoying.

Mine was the first symptom I noticed - twitching and jerking - severe enough that I mentioned it at a physical. It was dismissed then a few weeks later, difficulty coordinating my tongue to swallow. (Red alert for me) Still dismissed by my PCP. When they continued to increase to nearly all day/night along with balance/coordination and cognitive issues I respectfully demanded a referral.

Like you, I have pretty significant vision issues. It's my largest concern. They haven't been able to figure out what's wrong yet. My VEP came back with no latency (so they said it's not ON). I'm okay with that but they still need to figure out why I have had these symptoms for nearly 10 months now.

I think I'd been concerned he isn't the doctor to diagnose you and get the proper treatment.

[jensequitur]

I can tell where my myoclonic jerks of the spine come from - the spine!  I can actually feel them building up, like a sneeze... and then ACHOO!  The jerk happens and the pressure is released, only to build up again.

I believe that myoclonus, in various forms, is more common than the doctors realize.  I've heard lots of people on this forum talk about myoclonus without realizing that's what they have.

[aussiepixie]

Thanks wiggles94 for your long answer...Yes I agree that I am getting the testing that I require.   I have an EEG coming up later this month and then tests in hospital for balance and audiology which the neuro initially said would give him an answer.  They include ENG, EOG, rotational test, Visual vertical test and VEP.  In the audiometry section there are about 6 different tests including BERA.

The ophthalmologist is the one who has referred me to the neuro/ophthalmologist and my neuro was none too thrilled to find that out.  I will see him in early September.    

I now plan to try and not stress too much, have these tests and see the neuro again for results. I will also see the neuro/ophthalmologist as I am concerned about my eye and the continuing discomfort and light and glare sensitivies.

thanks again

[aussiepixie]

Thanks for you answers RedFlame,

I also agree with what you say about the extensive neuro exam.   When I saw my neuro quite some weeks back he didn't do any neuro testing at all apart from tapping my ankles.   This is the second time I have seen him for a similar problem but the first was back in 2006/07 where he did do a complete physical examination.   I have worked for doctors for many years including neurologists (actually,including this one) and one particular doctor used to always say that doctors today rely too much on diagnostic testing and not enough on symptoms and examinations.  I totally agree with this and  fee that a lot of them do rely on the results of scans and not on their ability to diagnose symptoms.   Thanks again for your input.  

[aussiepixie]

Thanks Deb for the link for the myoclonic spasms.  I will certainly check it out.  

Yes I have had now two brain MRIs and then yesterday the sagittal FLAIR one.   The first one back in 2006/7 was reported on as normal.   The neurologist (the same one as I am now seeing) told me that he could see several very small white marks that were worth him keeping and eye on but offered no follow-up or showed no concern about them.    The one I had several weeks ago is the one where I included part of the report above.  This is when he sent me for the FLAIR and the indication was marked as ? MS  ? L'Hermites.  So in all that, he has one from 2006/7 with 'little white marks' and one with some sort of lesions.  

As far as the eye problem goes.....the ophthalmologist who I have seen twice now says that he can see nothing wrong with either eye but he is keen for me to see the neuro/ophthalmologist, which I will do in early September,  as whatever is wrong with it is coming from my brain not my eye.  

I like that your neuro thinks he has met his match and is happy for you to move on to the MS specialist.  When my neuro looked at my scans yesterday he told me that he would be happy to have a brain like mine!!!!!   When I tried to look at the scans closely he seemed to whip them away.   Actually I thought it was pretty cheeky of him seeing as my brain has lesions that he can't explain.

P

[aussiepixie]

Thanks for your comments as well.    Everyone has been very helpful and patient with my long rants.     I will now try and be patient myself and await my further tests.   I will post as more results come to hand.    Hope everyone stays as well as can be.

P