Your browser does not support Javascript
email@mymsaa.org
Multiple Sclerosis Association of America Logo
Link to FaceBook Link to Twitter Link to YouTube Link to Pinterest
Register Why Register Contact MSAA Site Preferences Print Page Home
Improving Lives Today!
Donate Button
The Motivator iconMSAA's MAGAZINE
The Motivator
Booklets and Brochures iconBooklets & Brochures
MS Research Update 2014
MS Research Update 2013
About MS
Medicare Planning
and Multiple Sclerosis
The Affordable Care Act
and Multiple Sclerosis
Aquatic Exercise and Multiple Sclerosis:
A Guide for Patients
How to S.E.A.R.C.H.™ for the Right
MS Therapy for You!
Understanding and Treating
MS Relapses
Solutions for Wellness: A Guide to
MSAA's Programs and Services -
Second Edition
The Multiple Sclerosis Association
of America Programs & Services
Guide in Spanish
Mommy's Story
Daddy's Story
Understanding and Treating
Depression in Multiple Sclerosis
MSAA Monograph: Thinking about
Complementary and Alternative
Medicine?
MSAA Monograph: The Confusing
World of Clinical Trials
Multiple Sclerosis and Cooling
(3rd edition)
Primary Progressive Multiple
Sclerosis: What You Need to Know
Order Publications iconOrder Publications
Individual Order
Group Orders



Home > MSAA Publications > The Motivator > The Motivator: Winter/Spring 2010 > Ask the Doctor
Share this Page:
submit to reddit

Ask the Doctor

By Dr. Jack Burks
Chief Medical Officer for MSAA

Dr. Jack Burks Photo
Dr. Jack Burks

Spinal Cord Lesions vs. Brain Lesions

Q: Do spinal cord lesions affect body function and disability the same as lesions found in the brain?

When I was first diagnosed three years ago, my neurologist stated that he had "never seen so many lesions on a spinal cord," which I was terrified of hearing. About 30 percent of my spinal cord has lesions, but I don't have any lesions in my brain. I am scared that the spinal cord lesions will lead to not being able to walk. So far, all of my exacerbations have been with my eyesight and vertigo - nothing yet affecting my legs.

In your experience, is there more significant disability in terms of mobility linked to spinal cord lesions compared to brain lesions, and vice versa? Have there been any studies regarding the location of lesions?

A: As in your situation, sometimes the correlation of the specific abnormal findings on the neurological examination may not be reflected on the brain and spinal cord MRI. This works both ways. For example, sometimes MS lesions on the MRI are very numerous and the exam is relatively normal. Conversely, sometimes we see very few MRI lesions in MS and the person has significant disability. In other words, the MRI in MS is less precise than one might expect. In contrast, with stroke patients, the MRI lesions correlate very well with the clinical signs. One explanation is that, in MS, the myelin can be partially damaged by the inflammation seen on the MRI, but not totally destroyed. Therefore, the "messages" can still get through enough to function. In stroke, the damage is more complete, so the MRI is better correlated with the examination.

However, MS expert neurologists believe that many lesions on MRI still constitute a serious situation because the increasing damage will likely take its toll eventually. We have found that the amount of MRI damage in MS patients may likely predict future trouble. Although not always (as in your situation), the MRI lesions in the spinal cord usually have a better correlation with a neurological exam than MRI brain lesions. When I evaluate MS patients who say "30 percent of my spinal cord has lesions on MRI," I highly recommend they be on an MS treatment to reduce the inflammation.

To answer your question, in general, spinal cord lesions are more likely to be correlated with mobility-related disability than brain lesions. You are correct to be concerned about future walking problems. Spinal cord lesions are often associated with weakness and spasticity (stiffness) in the arms and/or legs, along with numbness or tingling. Problems with bladder, bowel, and sexual function may also occur.

I have one last comment. I suspect you have MS. However, since you have visual problems and spinal cord lesions, I suggest you talk to your doctor about another disease called Neuromyelitis Optica (NMO) or Devic's Disease. This disease primarily affects the eyes and spinal cord. A blood test (NMO antibody) is available. Devic's Disease usually has prominent spinal cord symptoms, but not always. Also, the treatment is different than for MS.

Q: During the holidays, I cut myself while opening a ceramic gift that was broken in transit. I could not feel that I was cut, nor did I notice how much I was bleeding from the minor wound (which was soon remedied with a bandage). How does absence of sensation fit in with not noticing a great deal of bleeding visually?

Similarly, I now have a habit of losing things that are in my hand. I have had to purchase several duplicate car keys to ensure that I may drive my car. Diving in the dumpster and trash can to retrieve lost items is not new to me. Could you fill me in on how the loss of sensation relates to other things?

I try to be organized and put things in specific places, which helps to a degree. But I have a difficult time when I am holding things. Any insights would be greatly appreciated.

A: Your letter illustrates the many facets of MS symptoms, including visual disturbances, loss of sensations, problems with organizational skills, and memory difficulties. Your problems stem from scarring in multiple areas of the brain (which is how multiple sclerosis was named).

While we do not have the MS "cure" and do not have adequate drug treatments for some MS symptoms, there are programs to help people with MS to compensate and adjust to various symptoms. These may help individuals to maintain their productivity and quality of life.

For example, rehabilitation programs are designed to improve one's function, even in the face of increasing symptoms. Cognitive (memory) rehabilitation, physical therapy, occupational therapy, and speech therapy are examples of specific interventions that are aimed to enhance body and mind function in MS. You have already discovered some ways to help compensate for some of your problems (such as losing things). Your doctor can help you explore other options as well.

Q: I was diagnosed with MS recently and my doctor recommended that I start on Copaxone. Are there any studies on the long-term effect of this medication? Have there been people who have been on the drug for five years, 10 years, or more, who have been studied for their overall health? Also, if a person starts on the medication and for some reason stops at a later date (one year, two years, etc.), have there been studies as to whether the lesion progression increases markedly more than would normally occur?

A: Your question is timely. Researchers have recently published results after studying people continuously while they have been on Copaxone® treatment for 15 years. These results were terrific news for these patients and confirmed earlier observations. People on Copaxone were usually doing very well after 15 years. In addition, it was very safe and was well tolerated.

Specifically, more than 80 percent of patients treated with Copaxone for 15 years were still walking without any assistance, even though they had MS for an average of 22 years. Their MS relapse rate decreased by 78 percent, and two-thirds did not go on to progressive MS. This is a much greater portion than predicted for untreated patients. This good news further encourages me to help people stay on therapy for the long run. Remember, current MS medications do not continue to work, unless you stay on the treatment. Discontinuing any disease-modifying therapy that has some positive effect, will likely lead to a return of disease activity if no other treatment is prescribed. No data is available to indicate that lesion progression increases markedly more than would normally occur, when discontinuing Copaxone.

The long-term trial results tell us something else that is very important. The people who were on placebo at the beginning of the clinical trial also did well when they were switched to Copaxone after the trial. However, they lost some ground by being on a placebo for a short time - and they never caught up. One lesson learned by these data is to begin therapy early for maximum benefit.

Studies with the other MS disease-modifying therapies (DMTs), specifically the interferons (Avonex®, Betaseron®, Extavia®*, and Rebif®), also show that people on treatments for a long time did well. Individuals lost ground if they did not start therapy early. Two other DMTs, Novantrone® and Tysabri®, have several years of study behind them as well to support their effective use in treating MS. Novantrone may only be used for a maximum of two to three years, due to potential heart problems and leukemia risks. Tysabri requires close monitoring to watch for a rare but serious viral infection.

(*Please note that although the second brand of interferon beta-1b, Extavia, has not undergone years of research, it is the same medication and dosage as Betaseron, which has been studied extensively and has been prescribed since the early 1990s.)

Further, these data suggest that being off of a disease-modifying MS therapy for a significant time period is not a good idea. More ground may be lost. That is why we usually switch therapies, if there are problems, rather than discontinue all MS medications. We have learned that the current MS treatments do not work as well if we wait to start them later in the disease course.

Q: I have a combination of medical problems and have found that I need some help with recognizing if or when I am having a relapse. With respect to other conditions, I have had ear problems since 1972. These cause imbalance, dizziness, and the feeling of being pulled to the left or falling forward. I also have a tarlov cyst on the sacral spinal canal favoring the right side, and this causes tingling down the right leg. Additionally, I have arthritis which causes pain in the back and legs.

I know that these can also be signs of an MS exacerbation, so when these symptoms are acting up, I don't know if I am having a relapse or not. Could you please give me some ideas on how I might be able to separate other problems from those caused by MS?

I have a second question as well. Every cholesterol medicine I have taken (Crestor®, Lipitor®, Zetia®) seems to cause my symptoms to act up. Is there a cholesterol medicine that I may be able to better tolerate, and may not increase my symptoms?

A: To answer your first question, multiple illnesses with overlapping symptoms can create a challenge for the neurologist. The key difference is that the changes during an MS exacerbation are usually very specific on the neurological examination and the MRI. The neurologists and neuroradiologists (MRI experts) are well trained to separate these differences. While the symptoms may be similar, the exam and/or MRI are usually different for the different diseases. But not always! My advice is to consult your neurologist if you think you may be having an MS flare-up, as he or she is the best person to determine the cause of your symptoms.

To answer your second question, cholesterol medications do not increase MS symptoms in most MS patients. In fact, recent data indicate a positive effect by statins in MSpatients. However, some controversial research (the results are not supported in other studies), indicates that statins, which are cholesterol-lowering drugs, can interfere with interferon therapy. The interferons include Avonex, Betaseron, Extavia, and Rebif.

Unfortunately, you feel that Zetia, a non-statin drug, also causes an increase in MS symptoms. There may be something else going on, so your doctor should be aware of any changes in your symptoms. Ask your doctor about other ways to lower your cholesterol. If necessary, other options to lower cholesterol are available. For example, exercise and a low fat/high fiber diet may help. Also, other cholesterol-lowering drugs you may want to inquire about include niacin, cholestyramine, and gemfibrozil. While you have a complicated situation, your doctors can work together to help. Do not try to sort it out alone.

Q: I am at a total loss. I recently had an MRI that showed 17 lesions, but the neurologist said that the lesions were not big enough to be caused by MS. The research I have read states in many cases that you can't confirm MS right away. Additionally, the person reading the MRI at the imaging facility wrote in the script that it was MS.

I am still worried about what these lesions are and what they will become. I am going to have another MRI in six months to see if the lesions have changed. Can smaller lesions still be indicative of MS, or could these lesions be attributed to some other condition? Is there any other type of testing I may do to find out more about these lesions?

A: Multiple small lesions on the MRI are only one factor in determining the diagnosis of MS. Other conditions can look similar to MS on the MRI. Other factors in the diagnostic decision making include the neurological history and examination, the course of the illness, the presence of other previous conditions/diseases (such as previous head injury, high blood pressure, diabetes, or migraines), the spinal fluid evaluation, the location as well as size of the MRI lesions, the evoked response testing (especially the Visual Evoked Potentials), and blood tests to rule out a variety of other MS-mimicking diseases. You may not have heard of "evoked potential testing," since it is not used that often. They are done when diagnostic questions arise. Evoked potential tests measure the speed of nerve conduction within the central nervous system from the eyes, ears, and limbs.

The radiologist who interprets the MRI sometimes does not have access to these other data. The first thing to do when there is a question is to have your neurologist talk with the radiologist. I suspect this has already happened. Most radiologists are not so bold as to make an "MS diagnosis" by the MRI. I suspect the report merely said that MS was one possibility.

If there are questions remaining, I usually recommend the additional tests (just mentioned) and a repeat MRI in three to six months before arriving at any conclusions. While I usually recommend early treatment (noted on page 18), I do not treat until the diagnosis of MS is reasonably assured. Your diagnosis does not seem to be firm. Last, you could get a second opinion from an expert at an MS center.

Q: I was diagnosed in late 1993 with relapsing-remitting MS at the age of 36. I am now 51, and in the past year, I have graduated to the secondary-progressive stage. It has greatly affected my left side with weakness and pain. I ambulate with a walker and use a wheelchair for those times for long distances. I take Baclofen, Dantrolene, and Diazepam for spasticity. My therapies have included Betaseron, Copaxone, Tysabri, and I will soon undergo my second Novantrone treatment.

My question to you is: what are your feelings regarding mercury in silver fillings? Everything I have read indicates no correlation between mercury and MS, however, I am seeing more and more internet blogs from people who have had these fillings removed and their MS symptoms literally disappear.

In my personal experience, a close friend of my husband's was diagnosed with arthritis and was nearly wheelchair-bound from it. He had all his silver fillings removed and remains symptom-free to this day. At our local YMCA, I met a man in his mid-50s who explained that he was diagnosed with MS almost 30 years ago after frequent falls. A few years later he had all the silver fillings in his mouth removed, and has been completely symptom-free ever since and his doctor states there is no sign of MS on his MRI.

I have discussed this with my dentist. Obviously, he can't recommend that I have this done, but explained the procedure to me. I am planning to also discuss this with my neurologist, as I am seriously considering having my silver fillings removed. What are your thoughts on mercury and silver fillings in relation to MS?

A: You have been through a gamut of treatments. The good news is that I predict two new treatments may be available in this next year. They have different treatment actions than the current meds and may be worth considering when they are available. They also have different "adverse event" profiles, so your doctor will need to help you put things together.

As for the removal of mercury fillings, this metal has been blamed for many diseases, even though no scientific data exists to support these claims. True mercury toxicity has different signs and symptoms than MS. Nonetheless, the "Mercury causes MS" theory has been around for years. I have had many patients go through the removal of teeth fillings. Many feel better for awhile having done the procedure, but their disease usually continues to progress.

You mention the miraculously cured patients, and I am pleased for them. In my experience, some patients (10-15 percent) have a "benign form" of MS, where they get very sick but recover and continue to do well, without any treatments. Unfortunately, some of these patients get more disability later in life.

The relapsing-remitting form of MS is very tricky when judging treatments, which is why rigorous, placebo-controlled, blinded studies are necessary to accurately evaluate a potential therapy. Remissions occur naturally. Determining a treatment effect requires a blinded comparison between the treatment and the placebo groups. In MS trials, improvement can be seen with the patients on placebo. However, this placebo effect is less than the treatment effect.

In summary, the current FDA-approved treatments have stood the test of time. I refer you to the answer on page 18, where you can read the reports of proven treatment successes after 15 years - in scientific clinical trials. Mercury removal has been around for a longer period of time, but there is no scientific data to show any long-term benefits. It is a lengthy procedure with no scientific data to support its benefit in MS. After you take the Novantrone, if it is not successful, talk to your doctor about the new, oral treatments which are likely to be coming soon.

To Submit Questions to Ask the Doctor...

If you have a question that you would like to ask, please submit your question to:

MSAA
Questions for Ask the Doctor
c/o Dr. Jack Burks
706 Haddonfield Road
Cherry Hill, New Jersey 08002

Readers may also send in questions via email to agriese@mymsaa.org. Please be sure to write "Ask the Doctor" in the subject line.

Jack Burks, MD is the chief medical officer for MSAA. He is an international MS neurologist, writer, lecturer, and researcher, who assists with the development of new MS therapies and advises patients, families, MS organizations, and healthcare groups. Dr. Burks is a member of the Clinical Advisory Board of the NMSS. He has written and edited three MS textbooks, as well as numerous chapters and articles on MS. In recent years, he has lectured and evaluated patients in more than 40 countries.

Back

Last Updated on Monday, 25 March 2013 12:17