Two neurologists opposed in their MS diagnosis

I have been ill with exreme fatigue and many other symptoms for over 10 years. At first I was diagnosed with Chronic Fatigue Syndrome.  I was diagnosed with mild MS in 12/07 after I suffered an attack to my brain. The neurologist not only consired my medical history and reviewed my all medical records from 1990s to present but also did a spinal puncture test which came out abnormal suggesting MS. He also ordered the evoke response test that also came out abnormal suggesting a problem with my righ eye. The problem with my eye was later confirmed by my ophtalmologist.  I do have symptoms of mild tremors in one side of my body , loss some vision, my cognitive abilities are getting pretty bad lately , I have days of confusion or foggy sensation, lots of symptoms of dizzy, stiffness in my legs , hips , neck and tingling in arms , head , legs etc...like needles pinch in my toes and hands . It gets pretty scary sometimes...Prior to the attack I had periods in which I lost sensation in different parts of my body.  Could not feel hot water and burn myself. Could not feel cold or hot water only parts of my body. I felt pressure in my scalp at times . After the attack I lost some strength in my left side ,arm, hands  and leg and I had many accidents at home when I lost balance all the time. I spent 6 month with severe dizziness that kept me from driving. Most  of the weakness got better over. My first neurologist suggested to take Avonex but side effects kept me in bed pretty ill as if I had the flu. With the Avonex I got recurrent shingles outbreaks and it caused me intolerable nerve pain from waist down. I have suspended the medication but the nerve pain continues after over 6 months.

On 12/08 a second neurologist with just an MRI result told me I dont have MS because my brain lesions are small and I have only 3. The second neurologist told me that she doesn't know what I have , even when my brain showed some lesions. I was so happy when she said that I dont have MS, but now I am not sure as I have real symptoms and no diagnosis. She left me in t he air and told me I dont need to see her anymore as she doesn't think I have MS.  When I ask her what is it that I have she said that doesnt know what I have and that I dont have to return to see her as I dont have MS.  Do people with few small brain lesions and an abnormal spinal puncture test could also have MS?

Can a doctor rule out MS based on the MRI only or in the fact that the brain lessions are small? I dont know what to do now as I have two doctors contradicting themselves. I like to know which hospital in the northeast would be more knowledgeable on MS?

[Quixotic1]

Oh, my....Do I have a lot to say to you!

First, a big welcome to our forum.  I hope you find us a friendly place to talk and chat and get answers.  I am Quix, one of the Community Leaders and a physician in my former life, tho, not a neurologist.  I try to stay up-to-date on what is known about MS and answer questions here on the forum.

Well, you unfortunately came across an all too common type of neurologist - one that we call a dododoc - or an idiot, lesion-counter, sorry excuse for a specialist....we have all sorts of names for the neruologist you saw in December.

I'm going to give you your answer first and then talk about why we feel this way.

The doctor you saw in 12/08 is woefully undereducated in multiple sclerosis.  She clearly does not understand how the diagnosis of MS is made.  She is under the mistaken impression that all you need to know about a person is what their MRI looks like.  This is terrible.  She did one thing right, though.  She said you don't need to see her again.  That's great!  You don't need to be under the care of a doctor who is so stupid.

What did she do wrong?

1)  She made a snap judgment about whether you had MS based only on an MRI.

MS is a diagnosis that depends heavily on the kind and pattern of the symptoms you have been having.  A good neurologist will take a very careful history, looking for signs that the person has had attacks of symptoms of the kind you see in MS, like weakness, tingling, numbness, vision problems, dizziness, urinary or bowel problems, tremors, spasms, problems walking or with coordination.  They also would note more non-specific things like cognitive difficulties (memory, word retrieval, slowed thinking, problems multi-tasking) and heat intolerance.  More than one attack which improved is strong evidence pointing toward MS.

Then a good neurologist would do a neurological exam to see if the person had any abnormalities that would also suggest MS.  These could be things like weakness, strong reflexes, nystagmus (jumping of the eyes), problems with sensation (touch, pain, hot, cold or position), balance problems, coordination problems, spasticity, altered gait when walking.  More than one of these problems is the second piece of strong evidence that someone might have MS.

Then they would see what treatments you might have had.  You had 6 months of Avonex, which is not very long, but it is long enough to begin modifying the disease and a good neurologist keep that in mind when they got to ---- THE MRI,

Now, in a person with a clear history of attacks and remissions, who also had abnormalities on the neuro exam, a good neurologist would need only a single lesion or two to tip them over into the diagnosis of MS.  Yes, these lesions would need to be in the areas generally where MS lesions are seen.  But, it is important to know that when the history and physical already show that you have had multiple attacks, this shows that you have a disease that is spread out in TIME (called Dissemination in Time).  When yu have different abnormalities in the neuro exam, this shows that the disease has spread out in SPACE - called Dissemination in Space.  

Theoretically you could make the diagnosis of MS with just those two things and the MRI wouldn't even matter.  However, realistically, almost all good neurologists expect there to be "some" abnormality.  So, if you have a few lesions that would be plenty to call the diagnosis of MS.

Now, how big do the lesions have to be?  Some neurologists would say that they only count lesions that are 3mm in size and larger.  That is not a hard and fast rule and it is well-known by the good docs that in MS, lesions can vary from so tiny that they are invisible on the MRI, to pin-point, to really quite large.  It is ridiculous to say that a person can't have MS because their lesions are too small!  If the MRI was done on a low power machine, even good sized lesions sometimes will seem tiny or won't show up at all!

Then, if the doctor was thinking with her Big Girl Brains, she would realize that you had 6 months of a med that could have given the brain time to heal her lesions.  Some might have shrunk and some might have disappeared.  Clearly this lady doc wasn't cooking on all four burners.

Too few lesions?  Well, clearly this woman is one of the kind of neurologists we like the least here - a Lesion Counter.  Lesion Counters count lesions because they can't or don't like to THINK.   She probably believes in the myth that you have to have 9 lesions to have MS.  What poppycock!  Clearly she hasn't read or couldn't understand the guidelines for MS diagnosis called The McDonald Criteria.  Only in special circumstances does a doctor actually count the lesions and hope they add up to 9 or more.

So, the second neuro is a dud.  Please forget about what she said because she is WRONG on everything that she said.  I feel bad for people who depend on her.

Now, why did you leave the first neurologist?

I can see that you now have real doubt and if you don't trust the first neuro or something you should seek a second opinion.  I would say a third opinion, but the lady neuro was so wrong, I couldn't advise you to listen to ANYTHING she said.

After the Avonex was not good for you, did you switch to Copaxone?  that would make the most sense.  It is not an interferon beta like Avonex (and Rebif and Betaseron).  And it does not have the flu-like symptoms that the interferons can have.

I would also like to comment on the label of "mild" MS.  Nothing that you told us shows a mild disease.  You are very affected by your symptoms.  they seriously alter your life during attacks.  While I don't disagree with starting you out on Avonex, I do disagree with telling you what is happening to you is mild.

Well, I've said a lot.  I'm sure others will be by to talk to you  (and probably dump on the lady neuro).  One place you can look for a better MS neurologist is to check  msneuroratings.org.  This is a place where people can report on their experiences with the good, the bad and the ugly.  While you are there you can comment on the two neuros you have seen.

While no one on line can say whether you do indeed have MS, your description of the symptoms, the improvements, the testing and the MRI all make it sound like you do.  If I were a betting woman I would say there is little doubt.

We have a lot of info here where you can learn the things that help you understand this disease and what the neurologist is telling you.  I hope you stay.

Quix

[biowham]

Go get 'em, Quix. Reading about that December neurologist made my head explode.

Welcome to the forum, Enid. As you can tell, this is the place to come for good, accurate information...and a ton of support.

Bio(Waddles)

[PastorDan]

Sorry about this, Enid.

I'm getting the impression that certain specialties are oversupplied with arrogant self absorbed idiots, & I ain't thinkin' about no pediatricians.

Two things, take 'em or leave 'em.

1. A friend pointed out recently that half of all graduates from medical school graduated in the bottom half of their class.

2 Someone asked recently (on here, I think) what the difference is between God and a neurologist.  The answer: God understands that He's not a neurologist.