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
- 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 Hospital and Cleveland Clinic
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
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
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
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
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
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
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:
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
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
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
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This chat occurred on November 10, 2011
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