Online Health Chat with Dr. Devon Conway
November 10, 2011
Cleveland_Clinic_Host: Wellness means different things to different people. People with MS sometimes get so caught up in treating the disease that they neglect other aspects of their health. At the Mellen Center, we encourage patients to use a variety of wellness strategies:
- Avoid behaviors that negatively affect your health. Mellen Center research shows that smoking seems to hasten the progression of MS. We strongly urge smokers to quit. Also, people with MS have more problems tolerating excess alcohol or drugs than do people with no health issues, and MS medications may interact negatively with alcohol. Control of these habits is key.
- Make a health maintenance management plan. Poorly controlled diabetes and high blood pressure have a negative impact on MS. Like everyone else, people with MS need regular checkups, immunizations, and routine screening tests such as Pap smears, mammograms, and prostate exams. Due to a greater likelihood of osteoporosis, MS patients should also get bone density scans.
- Follow a healthy diet. No one knows if diet has an effect on MS, despite Internet claims to the contrary. At the Mellen Center, we recommend a heart-healthy diet with little red meat, lots of fruits and vegetables, and fewer carbohydrates and fatty foods. If you are overweight, we suggest you look at reasonable ways to slim down.
- Stay active. If possible, follow an exercise program. Aerobic activities such as walking, swimming, running, and pedaling a stationary bicycle are beneficial. A resistance program with light weights may help you build muscle. Regular exercise reduces fatigue and depression and just makes you feel better in general.
- Do what you love to do. Pursue hobbies and activities that you most enjoy — anything from gardening to stamp collecting to therapeutic horseback riding. You might consider yoga, tai chi, or simple relaxation exercises, all of which are good for reducing stress and improving well-being.
- Explore complementary and alternative medicine strategies. At the Mellen Center, we have no specific recommendations on these approaches because there are few well-designed studies in the medical literature to guide us. If you decide to try an alternative approach, we ask that you inform your Mellen Center team to ensure there are no specific reasons to avoid it.
Devon Conway, MD, is board-certified in neurology and specializes in the care of patients with multiple sclerosis. His specialty interests include multiple sclerosis, neuromyelitis optica, and transverse myelitis. Dr. Conway sees patients at Lakewood and Cleveland Clinic Mellen Center.
To make an appointment with Dr. Devon Conway or any of the specialists in the Mellen Center at Cleveland Clinic, please call 216.636.5860 or toll-free at 866.588.2264. You can also visit us online at www.clevelandclinic.org/mellen.
Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Devon Conway. We are thrilled to have him here today for this chat. Let’s begin with some of your questions.
Symptoms and Concerns
Cat666: Can you explain the MS symptom called banding and identify ways to manage it?
Dr__Devon_Conway: Banding is a symptom that is typically associated with spinal cord lesions. Patients feel as if they are being squeezed by a band because the sensory nerves entering the spinal cord at the level of a lesion end up sending aberrant signals to the brain. A number of different medications may help to mitigate these symptoms. Two of the most commonly used are gabapentin (Neurontin) and pregabalin (Lyrica®).
kingb: Can MS make headaches worse?
Dr__Devon_Conway: Headaches are seen at an increased rate in patients with MS compared to the general population. Fortunately, there are a lot of good treatments available, both to treat an acute headache and to prevent headaches from occurring in the first place. I would suggest discussing these with your neurologist. If your headaches are particularly intractable, there are doctors who specialize in headache care who may be able to use special techniques, such as Botox® (onabotulinumtoxinA) injections, to prevent them.
fun_stuff: Can shingle symptoms be worse in patients with MS?
Dr__Devon_Conway: I am not aware that MS makes shingles worse. However, if a patient is immunocompromised from immunosuppressants (which are rarely but sometimes used to treat MS in the U.S.), I think the shingles might be more severe than otherwise.
hrobinso: What's the best way to keep sinuses healthy during the cold and flu season? I had an infection that is believed to have caused a relapse but don't like constantly being on antibiotics or nasal steroids.
Dr__Devon_Conway: I am not aware of any specific strategies for this other than washing your hands frequently and trying to avoid contact with sick people. I would recommend the flu vaccine in MS patients. (It is important to avoid the live vaccine if you are immunocompromised, however.) If you are having frequent sinus infections, it may be worth speaking with an ENT doctor to make sure there is no underlying cause for this.
swrobel: What does breakthrough disease on interferons mean?
Dr__Devon_Conway: Breakthrough disease is a term often employed when a patient has disease activity despite treatment (with interferons or other agents). This could be manifested as a relapse or changes on the MRI.
toto: What are the effects of pregnancy on MS?
Dr__Devon_Conway: Pregnancy appears to have a protective effect in patients with multiple sclerosis. This is one of the reasons why estrogen is being investigated as a treatment for the disease. Patients are often at risk for a "rebound" relapse after the delivery of their babies, however, so I typically recommend resuming disease modifying therapy as soon as possible.
On that note, it is important to recognize that none of the MS disease modifying therapies is considered safe during pregnancy. It is important to come up with a plan with your neurologist as to how you will come off treatment if you are going to try to get pregnant. It is also important to use good birth control when on the medications.
randr: What role does stress play in MS?
Dr__Devon_Conway: Stress is not known to specifically worsen MS, but we all know stress has a negative impact on our general health. As we have discussed above, it is very important to maintain your general health when you have MS because it helps you to better cope with the disease. Thus, stress reduction is key.
plq98: Are there complications associated with having joint replacement for someone with MS? My father has progressive MS and needs a knee replacement.
Dr__Devon_Conway: I am not aware of any specific complications associated with this procedure in MS patients. Your father may have a longer recovery time than the average person because of motor dysfunction from the MS, but otherwise I do not see a contraindication to the procedure.
christ: What are your thoughts on seeing a chiropractor and MS?
Dr__Devon_Conway: Chiropractors typically gear their treatments toward the joints in the spine. MS does not affect the joints, but instead affects the spinal cord itself. Therefore, I do not think that seeing a chiropractor would be specifically beneficial for your MS. If you have comorbid arthritis in your back, it may be helpful, but I would suggest letting your neurologist/PCP know that you are seeing a chiropractor.
dashone: Is there a commonly used system that rates the progression of the disease?
Dr__Devon_Conway: MS is typically classified into one of four types: relapsing-remitting, secondary progressive, primary progressive, or progressive relapsing.
In terms of rating the progression of the disease, there are scales that are frequently employed in clinical trials. These include the Expanded Disability Status Scale (EDSS) and the Multiple Sclerosis Functional Composite (MSFC). If your neurologist times you walking 25 feet at each visit, this is a component of the MSFC.
codymom1: I have read that the DMD are only good at holding off the progression of MS for approximately 10 years. Is this true?
Dr__Devon_Conway: The disease modifying drugs (DMD) that we currently have are most effective in the early (relapsing-remitting) form of multiple sclerosis. Benefits in the later stages of MS (secondary progressive) are more modest and typically restricted to patients who are still experiencing relapses. Because of this, we often think that patients have a "window of opportunity" early in the disease in which we can make a clear impact with treatment. The benefits of this early treatment are still being evaluated, but it is thought that this may prevent development of secondary progressive MS and accumulation of disability. Many patients with progressive MS may derive benefit from pulse corticosteroid treatment (IV steroids typically given every few months).
loftuto22: Are there any treatments recommended for secondary progressive MS?
Dr__Devon_Conway: Unfortunately, secondary progressive multiple sclerosis is very difficult to treat. As I said, some patients do get benefit with pulse corticosteroids, and this is a strategy I often employ. Methotrexate and IVIG are sometimes employed for SPMS treatment, but the evidence for these agents is not robust. There is currently a lot of attention in the research world toward "neuroprotective" agents that may help to prevent the neurodegeneration that is often seen in the later stages of MS.
jayne: I have good results for a week when taking Ampyra®, then regress. I go off for a month or two then try again with same short-term results. Is this common?
Dr__Devon_Conway: As you may know, Ampyra® (dalfampridine) works by blocking potassium channels, which helps demyelinated nerves to conduct their electrical signals. I have not heard this specific observation from any of my patients on Ampyra®. Theoretically, if it caused a shift in the expression of these channels on your nerves, the benefit may be attenuated after taking it for a long period of time. This is just a thought, though, and I do not know of any scientific evidence to back it up.
jayne: Can you take Gilenya™ if you have had herpes simplex (fever blisters)?
Dr__Devon_Conway: This is not an absolute contraindication for Gilenya™ (fingolimod), but because Gilenya™ seems to suppress the immune system, I would be worried that outbreaks may increase. I would recommend discussing it with your neurologist and perhaps an infectious diseases specialist before going on Gilenya™.
swrobel: What are the long-term side effects of continued use of Rebif ®? Does efficacy diminish?
Dr__Devon_Conway: Rebif® (interferon beta-1a) has been in use for the treatment of MS for around 15 years. We are not aware of any major adverse effects that come with using it for a long period of time. You should be followed to make sure it does not cause any elevations in your liver enzymes or decreases in your blood counts, which can happen with any of the interferons. The efficacy of Rebif® is not thought to diminish over time. However, some patients can develop antibodies to the drug, which will neutralize its effects. If patients have breakthrough disease on interferons, it is always important to check them for neutralizing antibodies.
loftuto22: What are "neuroprotective agents"?
Dr__Devon_Conway: A neuroprotective agent is any drug that helps to prevent MS patients from losing neurons in their brain or spinal cord. There is loss of brain volume in MS patients because the neurons are injured and degenerate. It is thought that this type of damage underlies the more persistent disability that can be seen in MS patients.
yesyesyes: Does chemotherapy have any effect on a person's MS? My aunt has MS and was just diagnosed with breast cancer.
Dr__Devon_Conway: I am not aware of chemotherapies making MS worse. Some chemotherapies have an immunosuppressive effect, and because of this, have been used to treat MS, which is an autoimmune disease. My recommendation for your aunt would be to go forward with the treatment for her breast cancer.
rocky43: I have begun to have a sharp pain in my lower right leg next to my calf. It lasts about 5 seconds and happens several times a day or night. It seems to only occur when at rest and not when active. I do exercise and try to eat properly. What, if anything, can you tell me about this and what are potential treatment options? Thank you.
Dr__Devon_Conway: There are a number of different things that could be causing this, and I would recommend that you have it evaluated by your local doctor. The doctor will want to rule out musculoskeletal issues or a clot in your leg called a DVT (deep vein thrombosis). MS itself can cause similar pains, which we term neuropathic pain. If other causes are excluded, it may be reasonable to try an agent for neuropathic pain, such as gabapentin or carbamazepine.
helping_hand: I have had MS for about 10 years. A couple of months ago, I had an accident and ended up with a concussion. Concussion symptoms have abated but have not gone away completely. I was wondering if this would be post-concussive syndrome or is it related to the MS. I do have an appointment with my doctor in a few weeks but was curious what your opinion is. Thanks.
Dr__Devon_Conway: My guess is that this is probably post-concussive syndrome. Patients who already have underlying neurological dysfunction (as may occur with MS) may be at greater risk for symptoms after suffering a concussion. I definitely would recommend being evaluated by your doctor to exclude any serious injury that may have occurred with the trauma.
ssparr: What causes the stabbing pain in the eye commonly found in MS patients? Are there suggestions for relief?
Dr__Devon_Conway: There are a number of things that can cause this. One concern would be optic neuritis, which is a common symptom in MS patients. It typically manifests with visual impairment and eye pain with movement. It would be important to be evaluated for this, as IV corticosteroids are a good treatment for optic neuritis. It could also represent a headache phenomenon, such as a migraine. Migraine prophylactic agents such as Topamax® (topiramate), Tegretol (carbamazepine) Effexor® (venlafaxine), or a number of other agents could be of benefit.
Diet and Exercise
cat_woman: Are there nutritional aspects to MS?
Dr__Devon_Conway: There is not clear evidence that a specific type of diet will help to prevent MS relapses or disability accumulation. However, patients who maintain their overall general health tend to do better. Thus, I typically recommend to my patients a diet low in saturated fats and plenty of exercise. Keeping comorbidities -- such as hypertension, diabetes, and high cholesterol -- in check are also likely to produce better outcomes in terms of your MS.
jellyb: In terms of exercise, what types of exercises do you recommend?
Dr__Devon_Conway: I recommend that patients with MS get a good balance of cardio activity as well as strength training. Patients who are more physically fit at baseline are better able to compensate if they develop disability from their MS. Physical therapy is an excellent method to help patients recover from MS, and the physical therapists will typically recommend specific exercises that will help to maintain health and can also help with things such as balance.
pleased2: What wellness issues are made worse or are harder to take care of due to the MS?
Dr__Devon_Conway: I would say that the most difficult issue to take care of is exercise because of the motor deficits that can occur with MS, as well as the fatigue associated with the disease. Trying to stay active and fit from the very beginning will help to manage this problem. Another important wellness consideration in MS patients is depression, which can be seen at a higher frequency than in the general population. We screen all our patients for depression prior to each visit and have a low threshold for recommending antidepressants, psychological counseling, or other interventions if any red flags show up.
hrobinso: Dealing with fatigue is a serious issue with me. Any advice on how to stay active when you're just too tired?
Dr__Devon_Conway: One thing that is important when dealing with fatigue in MS is to make sure that there isn't something else causing it. I like to screen all patients who complain of fatigue for other issues -- such as hypothyroidism, anemia, or vitamin deficiencies. If you snore at night or wake up not feeling refreshed, it may be reasonable to get a sleep study to exclude the possibility of sleep apnea.
If no other cause is found, it may be helpful to try energy conservation techniques. Physical therapists are experts in helping patients establish plans for how they are going to expend their energy each day, as if it were a budget for money. With persistent activity, it is often possible to increase the amount of energy you have available for any given day.
loftuto22: What are the most recommended nutritional supplements for MS patients?
Dr__Devon_Conway: I do not recommend specific supplements, but it is important to make sure you do not have any vitamin deficiencies. Low vitamin D seems to be a risk factor for MS, so I check all my patients' vitamin D levels. If it is low, I give them high dose supplementation to make sure it gets back into the normal range. It is also important to check vitamin B12 and folate, as these may produce neurological symptoms that could mistakenly be attributed to MS. Finally, if you are receiving steroids frequently for MS, it is important to take calcium supplements with vitamin D, as steroids can cause bone loss.
donnak: How important is hydration? With frequent urination a chore.
Dr__Devon_Conway: From an MS standpoint, I do not think that excessive hydration is necessary. I would recommend normal water intake in order to keep yourself and your kidneys healthy. Some patients who are on interferons find that drinking a lot of water helps to mitigate the flu-like side effects that can come with these injections.
jayne: My MS symptoms went away when I was pregnant. Would I be a candidate for the copaxone/estriol study? How would I participate? I live in the San Francisco area?
Dr__Devon_Conway: Information on this trial is available at: clinicaltrials.gov.
I do not see that any institutions in San Francisco are participating. However, it looks as if the study is sponsored by UCLA if you are willing to travel there. Typically, you can become involved in these studies by speaking with the study research coordinator. I would suggest contacting the UCLA Department of Neurology for additional details.
jayne: What is the latest on CCSVI? Who should consider it?
Dr__Devon_Conway: As you may know, Paolo Zamboni, a professor from Italy, released a study in which he studied the venous systems of MS patients and controls. He found that 100 percent of MS patients had certain problems with their veins and 100 percent of controls did not. However, a number of studies from outside groups have failed to reproduce these dramatic results. Some patients are undergoing stenting or ballooning of their veins because of Zamboni's findings, even though no well-designed, controlled studies have been conducted that showed this works. In fact, there have been a number of complications from the procedure, including at least one death, and patients in whom the stents migrated to other parts of their bodies. At this point, I would not recommend pursuing CCSVI except within a clinical trial. Such trials require approval from a review board and involve close monitoring to ensure the safety of participants. This may not be the case at many of the "boutique" clinics where CCSVI procedures are offered.
jayne: Last week in WSJ Marketwatch, there was an MS study mentioned regarding Fonar UPRIGHT® MRI. Is this an MS treatment?
Dr__Devon_Conway: Upright MRI is not a treatment for MS. It allows MR imaging of the body in positions other than lying flat on your back in an MRI machine. This type of imaging is most likely to be useful in assessing musculoskeletal issues, and I do not see a clear application for imaging MS patients.
dashone: What do you think will be the biggest potential breakthrough in treating MS in the next 12 months, 24 months?
Dr__Devon_Conway: There are a lot of very exciting drugs in development right now for MS. For instance, BG00012 is an oral medication in late stage clinical trials. It appears to be effective and does not have the same safety concerns that are present with some of the other medications. Another IV drug called alemtuzumab is in development. It is very effective in suppressing the inflammation that is associated with MS, but can sometimes cause adverse effects, particularly with the thyroid. I am hoping we will make some progress on neuroprotective agents, which may be very helpful in patients with progressive disease. The safety of stem cell treatment is also being investigated and is very exciting. A stem cell trial is being conducted at Cleveland Clinic right now under the direction of Dr. Jeffrey Cohen.
hardyhar: Are there additional screenings or changes in screening timelines recommended for people with MS?
Dr__Devon_Conway: In terms of general screenings for things such as breast cancer, prostate cancer, high cholesterol, etc., there are no changes in the timelines for people with MS. We do like to closely monitor patients who have MS for progression of their disease, which is usually done through serial MRIs and frequent neurological exams. Patients on certain MS medications should also have certain lab parameters monitored, such as their liver enzymes.
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Devon Conway is now over. Thank you again, Dr. Conway for taking the time to answer questions about MS and Wellness.
Dr__Devon_Conway: Thank you all for joining me today. I hope the information is useful!
To make an appointment with Devon Conway, MD, or any of the specialists in the Mellen Center at Cleveland Clinic, please call 216.636.5860 or toll-free at 866.588.2264. You can also visit us online at www.clevelandclinic.org/mellen.
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This chat occurred on November 10, 2011
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