Chat Transcripts

Good evening, everyone, and welcome. This is the second of the web chats scheduled throughout the month of March in honor of National MS Education and Awareness Month. We are pleased that you could join us, and honored to welcome our special guest, Dr. Greg Zarelli. This evenings topic will be Living in Limbo. With no further ado, Dr. Z.

Hello everyone! Just a forewarning, I'm a bad typist!

Could you please explain the McDonald Criteria, especially in reference to the number of lesions needed for a dx?

he Mc Donald Criteria were developed to "standardize" the diagnosis of MS. There are too many combinations of lesions and other diagnostic criteria to explain them all here. Suffice to say that if a large number of lesions are seen on an MRI (greater than 9) and they are in the right locations, in the right clinical context that would be all that is needed to make the diagnosis. Fewer lesions require more clincial attacks and/or new lesions on MRI. I keep a copy of the criteria in my office and show it to patients. A "picture is worth a thousand words" so ask your neurologist to show you a copy of the criteria.

You may send your questions for our guest now and at any time throughout the chat. Your questions will be sent directly to the moderator and Dr.Z. Questions will only be displayed to the audience as they are answered. There may be a brief delay between each question; please be patient while we type.

If you don't have lesions on a brain MRI, how likely is it you will have them on a spine MRI?

Spine lesions tend to have more "signs" on exam. I can usually tell after an exam if a patient will have spine lesions. In my experience having spine lesions with no brain lesions is unusual but not unheard of.

I have read that knowing diseases that can mimic MS can expedite the diagnostic process. Are some people diagnosed with MS only after every other 'mimic' has been ruled out? What are some of the common misdiagnoses?

Many diseases can mimic MS. I usually insist on a lumbar puncture because positive psinal fluid findings help to rule out many mimics.

If my doctor thinks I may have MS and I have MS symptoms, should I begin a disease-modifying therapy? Can it hurt me if I don't have MS?

We know from at least two large studies that persons started on immunomodulating therapy early do better than people who wait. While I advocate early therapy, I make sure the person has MS or the precursor state before I start treatment. The interferons and copolymer drugs will not "hurt you if you don't have MS but they're not fun to take.

I know two people who were misdiagnosed with strokes, when they really had MS. Is this common?

Answer: Not in my experience. MS lesions have a particular appearance. Again, I insist on an LP to help avoid situations just like this. The LP in a stroke patient would not be positive for findings consistent with MS.

What kind of symptoms mean you are more likely to have spine lesions?

Patients with spine lesions tend to have much more trouble walking and greater spasticity. Bowel and bladder dysfunction is also more common. They can also develop a sensory level.

What tests should I expect my doctor to order if we suspect MS?

An MRI of the brain is a MUST. Sometimes an MRI of the spine is helpful. I always want a lumbar puncture.

If a Spinal tap was done a year ago and came back negative, but a person is still having symptoms, would it be advisable to have another Spinal Tap?

Sometimes a second spinal tap will be positive. So in some cases it is helpful. But if your repeat MRI shows new lesions in the appropriate place, then it would not be necessary.

Can an MR Spectroscopy help clarify MS lesions vs. mimics?
Dr Z: Answer: MR Spec is more helpful to distinguish tumors. So in patients with tumefactive MS it can be helpful. But generally no.

DO YOU THINK TYSABRI WILL BE BACK?

Personally, I do not. PML is very rare and invariably fatal. Therefore, I cannot imagine the FDA will allow it back on the market. But it is a real shame. It seemed to be a very powerful weapon against MS.

Why is MS sometimes difficult to diagnose?

Because some patients don't have the "typical" symptoms or signs. In those cases I always look for the mimics and MS becomes a diagnosis of exclusion.

For those just joining us, we are chatting with Dr. Greg Zarelli about the process of diagnosing MS. You may send your questions for our guest now and at any time throughout the chat. Questions will only be displayed to the audience as they are answered. Please be patient while the doctor enters his answers.

what is tumefactive MS?

Tumefactive MS is a type of MS in which the lesions are very large and look just like a brain tumor. Patients can be misdiagnsoed and told they have a brain tumor. When the surgeons go in to resect it, they find it is MS!

what do you advise a person to do to cope with the emotional challenges of being in limbo. people just think you are a complainer or lazy. without a diagnosis, it's almost like you are lying - or that's how it feels sometimes.

it is hard ... I know that. I encourage them to find a support network through family, friends, the National MS Society or MS Foundation. I follow them closely with frequent MRI's and ask that they report all new symptoms.

If a person hag an MRI, examination of spinal fluid, and n evoked potential test ti diagnode the condition of MS, does it rule-out other causes like Neurosyphillis. In other words does the spinal fluid examination neccessarily identify any other possible causes or does it only identify oligoclonal banding?

Oligoclonal banding can occur in other diseases, not just MS. Special tests are required to rule out neurosyphilis, sprue disease, etc.

Remember, everyone: Questions will only be displayed to the audience as they are answered. Please be patient while the doctor enters his answers

does that mean that monoclonal antibodies in general won't be an option in the future?

Not necessarily ... But we need to understand why these patients developed PML. Biogen or other companies may be able to change the antibodies to stop them from causing MS but also allow the T-cells to do their normal surveillance work.

How often do you suspect a person would have a negative LP yet still have MS?

Negative LP's are rare, but not unheard of.

Is it possible for those over 60 to be diagnosed with MS?

Yes, but it is unusual. I would rule out mimics and see if perhaps the patient had signs of the disease earlier in life. A good history is very important in this case.

I have numerous symptoms of MS, but so far a fairly normal neuro exam, does this sometimes happen early in MS?

Symptoms are what the patient experiences. Signs are what the doctor sees and finds on exam. Yes, some patients have a lot of symptoms but no signs. In that case, the symptoms may be from something other than MS.

For those of you who already have a diagnosis and have submitted questions, please bear with us. Time permitting, we will see if Dr. Z will be so kind as to address them after the questions on the this evening's topic have been covered.

Keep those questions coming, folks!

If a brain MRI and a cervical spine MRI both show lesions is a LP still necessary?

No, not in the right clinical context.

Novantrone had some pretty serious side effects in some people. Why is that drug still allowed, but Tysabri isn't? How do they decide what to pull and what is worth the risk?

Novantrone is a very safe drug if used correctly. I have treated over 150 patients with it successfully with no adverse outcomes. Tysabri was pulled because 2 patients out of 500 developed PML, a very rare disease (an incidence of 1 in 2-3 million).

Touch briefly on patients who have symptoms of depression and /or cognitve issues with MS.

Cognitive issues are very common in MS especially as the lesion burden increases. We refer our patients for cognitive rehab and sometimes use Aricept, a memory enhancing drug, used for dementia. Depression is also quite common and can itself can a "pseudodementia" which is a false dementia. Treating the depression resolves the cognitive problems.

do you see many patients in 'limbo?' do they usually get a definitive diagnosis of MS eventuallY?

Yes, most within 1-2 years.

is an LP usually advised after a brain and a cervical MRI?

Every doctor is different. If enough lesions are seen, then an LP may not be necessary

Remember, folks: Questions will only be displayed to the audience as they are answered. Please be patient while the doctor enters his answers. Send your questions at any time.

Are the brain lesions caused by Lyme disease similar to MS lesions?

Lime disease generally causes more lesions in the spinal cord and is easily detected with a blood test.

I was diagnosed with Fibromyalga several years ago. Now I have other symptoms, and the doctors are looking at MS. The doctor said fibro is a 'bridge' disease to MS. What is that?

I disagree. Fibro is not related to MS in any way. Patients with Fibro may have symptoms similar to MS but the diseases are not related.

Do the one or two attacks required by the Diagnostic Criteria have to be documented by a Dr, or can it just reported by the patient?

It can be reported by the patient. That's how I get most of my information.

MS cannot be diagnosed without MRI lesions. MRI lesions are the hallmark of MS.

What is your feeling on knowing for sure a PPMS dx from a RRMS one? Would you start a PPMS patient on durg therapies

I find PPMS to be a hard disease to diagnose early. Most times you have to take a look back at the patient's history to realize they have PPMS. Often I will have a patient on treatment until I realize I am dealing with PPMS.

I notice a lot of you in the audience haven't submitted questions yet. Now is the time to get those questions in!

If interferons reduce the number of plaques on an MRI how does the physician chart the progress or extent of the disease process

The whole idea with treatment is to stop lesion formation. If a patient has no new lesions then that means the drugs are working well. It doesn't mean the patient doesn't have MS.

Unfortunately there are no treatments for PPMS. At this time I send my PPMS patients to our local medical university for experimental treatment.

how is it determined that someone moves from relapsing remitting to secondary progressive

It is a clinical judgment on the part of the doctor.

if my MRI shows no enhancing lesions does that mean that the MS has not progressed?

No enhancing lesions means no new lesions.

What is the smallest size lesion an MRI will pick up? Is there a certain size a lesion has to be for diagnostic purposes?

MRI's can see lesions as small as 1 mm. Generally MS lesions are greater than 3 mm in size.

I meant once you are confident that your are dealing with PPMS, would you then discontinue the therapy?

Yes.

Is PPMS usually diagnosed at an older age than say R/R? /

Yes. PPMS occurs in older patients and is more frequently seen in men

If you are sending a follow up question, please remember that Dr. Z may have moved on to another question in the interim -- please make your follow up question clear.

so one doctor could say you had PPMS, while another might say you had RRMS? there is no definite criteria?

PPMS is a type of MS in which the patient slowly loses function. They can have some exacerbations but they always see a steady decline in their functioning. It can be very hard to diagnose.

is going on novantrone an indication that someone is at secondary progressive

Generally speaking, yes. We will sometimes use Novantrone in very active and severe RRMS patients but it is generally used in SPMS patients.

aren't there different types of mri machine strengths?
Dr Z: Answer: Yes.

Why discontinue tx in a pt. with PPMS? And what tx would you discontinue?

Because studies have shown PPMS does not respond to any therapy.

We have about ten more minutes, everyone. Now is the time to get those questions in.

did you have any patients on Tysabri? will they now have to be monitored for adverse reactions? what should people watch for in terms of negative effects from tysabri?

Yes, I had three patients on Tysabri. It appears from the studies that the potential adverse side effects of the medication (PML) occurs only after the patient has been on it for many years.

Does the MRI strength make a difference in whether lesions appear?

The stronger the MRI, the more likely you will see a lesion.

what strength mri machine should an ms patient use for best/detailed results?

A strength of 3 is preferred.

if MRI shows lesions in brain, & spinal cord (cervical & thoracic)generally a little more each time MRI is done, and i'm at secondary progressive catagory, does that mean that it will continue to move deeper in the progressive states

50% of MS patients will become progressive within 10 years and 85 to 90% within 25 years. Unfortunately those are the statistics but with early treatment we are hoping these statistics will improve.

While Dr. Z is answering, let me just mention that a transcript of this evenings chat will be available by email and on the MSFs website. When you exit the room, you will be asked for your email address. If you would like to have a transcript sent to you, please enter your address at that time.

No one in my family has MS. I really enjoy working with MS patients.

is gadolinium enhancement available on all mri scanners?

Gadolinium is infused into the patient, it has nothing to do with the machine itself.

Will MS lesions sometimes grow in time, thus helping with a diagnosis?

Yes.

The question on that one answer didn't come through. The question was why Dr. Z got into neuro-immunology.

During the diagnosis phase how often will you do MRI's?

As often as necessary - sometimes every 3 months.

That's all the time we have for this evening. Thank you for coming, everyone, and a special thanks to Dr. Z for taking the time to be here. Please join us for again for future MS Education and Awareness Month events.

Well thanks everyone!

It really was my pleasure. Sorry for the poor typing!

Glad to help!