For those with ms

Hi everyone,

I would just like to ask those with a definate diagnosis of ms a couple of questions, purely for my own self.

I would like to know how many of you had lesions show up on your first mri?

Is their many of you on here that had to have repeat mri's before any lesions appeared?

How many of you had a negative L.P. at first before it may of gone positive.


I'm very curious as I had my horrible attack of symptons June 2007, many symptons that all hit me at once or after each other, then slowly subsided, and today almost 2 years later I'm left with mild reminders still.

My symptons do worsen in the heat,  but not so much now as we are coming into winter.

I posted Dr Kantor on the "Ask A Dr " forum titled under Limboland if any of you would like to read it.

I will appreciate any feedback.

Thanks again, Melissa

[Melissa072]

Hi Quix,

I would really love your opinion regarding my post to Dr Kantor under the title Limboland.

I'm still unsure about what he means with the serial negative mri's.

My mri's were only done on a 1.5 telsa,  would clear mri's on these make ms more unlikely.

Even if so, I know I still don't have an explanation for my symptons.

If you could get time to read his post, I would really appreciate it.

Thanks
Melissa

[jensequitur]

My first MRI showed a lesion in the right cerebellum, white enhancement of the right ventricle, and several punctate lesions in the periventricular area.  My LP showed 5 oligoclonal bands.

Melissa, there's a post by Quix - something about "Can you have MS with negative MRIs?"  It's worth a read, and will answer all - or most - of your questions.

[Quixotic1]

Hi, first I will report that my first MRI of the brain (1.5T) showed a small 4mm lesion in the periventricular frontal lobe.  It was called a UBO and deemed "insignificant."  I was TOLD by my neuro that my "MRI was normal" for two years with only this UBO.  My new neuro (leagues smarter than the old, evil neuro) stated the UBO was obviously a lonely MS plaque.

My LP was two years later and was positive for elevated IgG Index and one measely O-Band.

I have read Dr. Kantor's replies all along.  On the face of it, his answer to you says,

"Your symptoms could be from any of a number of diseases.  Since your MRIs and LP were negative there is NO suggestion that you could possibly have MS."

However, if you have read prior answers he has specified that repeated MRIs on a "3T machine and a negative LP would make it virtually impossible to have MS."  I pressed him twice about "repeated MRIs" on a lower power machine than 3T, like the 1.5T.  He ignored me each time.

So what we know about Dr. Kantor is that he does NOT believe that anyone with MS can ever have repeated MRIs (strength not specified) that are negative, especially when the LP is also negative.  We also know that he feels the lower strength, open MRI machines are useless.  So, somewhere in the middle, he starts believing that the MRIs show the whole story.  All of the MS organizations state that 5% to 10% of people with ms have normal MRIs.  His cryptic comment about vocal MS patients indicates that he does not believe that statistic.

When we look at the scientific literature and studies, we see studies that identified CIS patients who had normal MRIs at the onset (after their first attack) who went on to develop definite MS.  The percentage of these patients varies from 3% to 10%.  I don't know how Dr. Kantor reconciles these results.  Personally, I think the odds are against you having MS based on neg MRIs and neg LP.  But, even if the chance are 1%, they are 1%.  Someone has to have the cajones to call the rare bird.  Two things stand out for me.  What are we going to do with people who have really suggestive symptoms when the mimics have also been repeatedly ruled out?  

Along with repeating MRIs, the neuro exam should be repeated and the mimics blood work should be repeated.  What do we do when the person has two or more clear attacks and has two or more clear lesions on exam, but the MRI is still negative.  Do we leave them hanging to deteriorate?  The McDonald Criteria does provide for those people.  It states that a doctor CAN make a clinical diagnosis.  It says that MRI supporting evidence is desirable - but it does not say it is required.  I believe the person should be educated as well as can be that they may be entering a diagnosis that is not yet provable, but is so likely that we want to prevent further deterioration and treat them as MS.

Otherwise we are acting like there is some disease - identical to MS that they have, but that they know nothing about, no idea of how to treat it, and are willing to let the person twist in the wind with it.  This other "unknown disease" will be called "Demyelinating Disease."  They will be just as disabled.  They will suffer and deteriorate.  They won't qualify for SSDI, nor for a DMD, and it will be harder to gain protection under the ADA.  They will be abandoned up the creek without a paddle.

I have yet to see that they are studying this new disease, Demyelinating Disease.  No progress is being made on it.  Are we fllowing them for 10, 15 years?  We will warehouse these unfortunate souls.  That is okay, because at least we won't inadvertently treat threm with a very expensive med!  And our record of accurate diagnosis will remain intact.

I believe that we should explain the dilemma to them and give them the choice of getting treatment or possibly being mistreated.  Because they have NO OTHER ALTERNATIVES.

Okay, soapbox over.

Melissa, You have one symptom that is very suggestive of MS - even though Dr. Kantor disengenuously told me he didn't know what "suggestive of MS might be."  Hah!  You have the symptoms of bilateral Trigeminal Neuralgia.  This is rarely seen outside MS.  We have heard some neurosurgeons state that it exists ONLY in MS.

So, you have heard my rant (one of my 400 favorite rants).  

I would have to go back over your posts.  What are your abnormalities on neuro exam?

Quix

[HVAC]

abnormal reflexes and neurological exams for two years

I had three brain MRI's over 2 years with new lesions each time on 1 Telsa thats as high strength they say they have

abnormal Evoked and Baer 2 years ago, Neuro says we don't use VEP anymore

No one would do LP for 2 years   when they did elevated IgG and 12 O bands

Diagnosed with RRMS at the beginning of month had diagnosis taken away a week later. The Neurologist stopped Copaxone order dead in its tracks

Changed his mind towards Lupus, false positive ANA  did more bloodwork ruled out Lupus, negative DNA, SED etc

Diagnosed again with RRMS started Copaxone last Friday

Double vision for several months 2 years ago
Dizziness several months 1 1/2 ago
Weakness on the right side
spascity left thigh
cognitive difficulties worsening

Alex

[Udkas]

Hi Melissa,
I can relate to Limbo land and wanting the answer and confusion from what info you receive.  Sorry I know this question was meant for people who are diagnosed with MS but I just wanted to tell you that my neuro has not discounted out MS (he said almost could discount out MS) note the word almost, my MRI have been on T3 machines (well my latest).

When I was talking to him about T7 machines he agreed that they are picking up lesions not seen by T3, so why can't a person just have a tiny lesion in a difficult spot to image that can cause symptoms that just can't be seen. Quote from my Dr again "technology is not everything" and a quote from Dr Kantor that a good clinical exam with a good neuro can tell alot. (something along those lines)..

Dr Kantor also told me that it depends on how fast they process the machine (something about the magnets spinning), you can find the post he answered it for me on this forum.) Both Dr Kantor and my Neuro have said that spinal lesions are not as easy to image but can be there.

I would go have the T3 image, you have nothing to lose but lots to gain as if it does show up something you can have DMD.. if it doesn't just see if you can get it repeated in 6mths or 12mths or whatever..

Best of luck, sorry to bust in on your thread when I don't have a diagnosis..

[patientx]

No case is typical with MS, but my first MRI was done on a weak open machine and it showed plenty of brain lesions.  My symptoms were minor (and still are) and all my neuro exams have been normal.  Other mimics were ruled out, so I'm working on faith that the diagnosis is correct.  In fact, the first time I went to the neurologist with the MRI in hand, he didn't think it was MS - post-viral encephalomyelitis is what he thought.

I never bothered having an LP.  

[Momzilla]

I, too, am hijacking your thread without a diagnosis.  I just wanted to let you know that I feel your pain, Sister.

I am twisting in the wind, as Quix has so colorfully stated, and it is miserable.  My docs have truly ruled out everything other than MS, and yet I have not one lesion; not one band.  I have regular episodes of paraperesis that are becoming more frequent and just about every symptom and sign you can attribute to MS.  My VNG shows 'significant' evidence of a central lesion, but no MRI has revealed a thing.  So, know that I do feel your pain....

Hopefully there will be an answer soon for you.  Have you had any evoked potentials?  These tests can often show abnormalities before imaging technology can.  Have you had blood tests done to rule out other mimics?  This can help whittle down the list of other possibilities.  

Hang tough.  I'll be in the Demyelinating Disease Warehouse if you need me, waiting for someone with cahones to prescribe me some of those expensive meds.....

Feel well,

Momzilla*

[Rena705]

Back in 1993 I presented with Grand Mal Seizures.  I had an MRI that showed numerous lesions but the Neuro stated that he didn't think I had MS.  I then had an LP and it showed O-Bands and the Neuro changed his mind and diagnosed me with MS.  I was in remission until October 2006 when I presented with Paratrigeminal Neuralgia and was treated 3 times since then with IV Steroids, Prednisone and various other meds.

I am not on any Disease Modifying Drugs as my neuro seem's to think that there hasn't been any change in my MRI's and therefore will not prescribe the drugs unless my symptoms change which will push him to do another MRI which may show changes or may not.

I am the victim of lesion counters and can only wait and hope that things do not progress.

Lots of Hugs,
Rena

[Melissa072]

Thanks everyone for all your comments,  you all don't realise the appreciation I feel.

I don't talk about this to no one, not my hubby or my friends or family.

Because its been going on for so long, and they can't see my symptons, I feel some what of a hypocondriac if I do, so I tend to remain silent, and vent to you all.

I'm going away today for the long week end but will try to answer you all when I get back.

Thanks from the bottom of my heart, again, all of you, Melissa