Introduction
Cleveland_Clinic_Host: Multiple Sclerosis (MS) is a neurological condition that affects approximately 400,000 Americans and is, with the exception of trauma, the most frequent cause of neurological disability beginning in early to middle adulthood. Managing MS is a continuous process, and it includes a variety of medical, rehabilitation and psychological approaches.
The Mellen Center at Cleveland Clinic is the largest and most comprehensive program for Multiple Sclerosis care and research worldwide, managing more than 20,000 patient visits every year. Basic and clinical research conducted at the Cleveland Clinic sheds new light on MS every year.
Dr. Rae-Grant is board-certified in neurology and specializes in the care of patients with multiple sclerosis. Dr. Rae-Grant earned his medical degree from McMaster University Faculty of Health Sciences, Hamilton, Ontario, Canada and completed his neurology residency at the University of Western Ontario, London Health Sciences Centre, London, Ontario, Canada. He plays an active role at Cleveland Clinic Mellen Center overseeing education on multiple sclerosis in the northeastern Ohio region, assists with clinical trials, and is involved with resident and student education at the Clinic.
To make an appointment with Dr. Alex Rae-Grant, or any of the other specialists in our Mellen Center for Multiple Sclerosis and Treatment in the Neurological Institute at Cleveland Clinic, please call 216.636.5860 or toll-free 866.588.2264; visit us online at clevelandclinic.org/mellen
Welcome to our Online Health Chat with Alex Rae-Grant, MD. We are thrilled to have Dr. Rae-Grant here today for this chat. He is considered an expert in the field of Multiple Sclerosis. Let’s begin with some general questions about MS and symptom management.
Managing Symptoms of MS
Loretta: What advice do you give to your patients when you first give them the diagnosis of MS regarding their life, lifestyle, habits, etc.? Can you please expound on what you tell patients their future holds?
Speaker_-_Dr__Alex_Rae-Grant: In terms of general suggestions for people with MS that are newly diagnosed, we recommend stopping smoking because recent evidence suggests that smoking worsens the course of MS. We also suggest a regular healthy diet but we do not recommend any specific diet. We recommend regular exercise as this does seems to help symptoms of MS. We also recommend avoiding excess alcohol and avoiding drug use.
Prognosis in MS is much better than most people think. For example, one study showed that after 10 years of MS 2/3 of patients are no worse in their physical abilities. We tend to be encouraging about the future for people with MS particularly in view of new advances and treatment.
Nystrom: What are the symptoms of MS that patients face?
Speaker_-_Dr__Alex_Rae-Grant: Patients with MS may have a wide variety of symptoms. For example, numbness and tingling somewhere in the body, dizziness, fatigue, weakness, double vision and unsteadiness may all be MS symptoms. Individuals may experience different symptoms at different times. We cannot predict which symptoms an individual will experience.
ssparr: Is there recommended journaling guidelines for monitoring symptoms? What exactly should we be journaling?
Speaker_-_Dr__Alex_Rae-Grant: Keeping a list of your symptoms particularly those that you want to discuss with your doctor is a good idea. Otherwise it is up to you as to how much time and effort you wish to put into journaling.
benandgert: Is there a correlation between familial tremors or other neuro disorders and MS?
Speaker_-_Dr__Alex_Rae-Grant: There is no correlation between familial tremors and MS. Some people with MS will develop tremors but they are often related to balance problems or trouble reaching for objects which is different than essential tremor.
pierrelima: Is Multiple Sclerosis a genetic disease? My son has MS and he is afraid to have children. Is he right?
Speaker_-_Dr__Alex_Rae-Grant: MS has a genetic factor but it is unclear at present how this factor allows MS to occur. The children of people with MS have about a 3% lifetime risk of developing MS. We do not usually think of this as a large enough risk to alter plans for having children.
Emotional Mental Symptoms
Heron2: Is there any correlation between MS or MS meds and mood swings?
Speaker_-_Dr__Alex_Rae-Grant: During course of MS as many as half of the patients with MS will experience depression. We do not understand why this is such a strong association. It does not appear to be primarily due to the medications taken for MS.
Interferons such as Betaseron® (interferon-1b), Rebif®, and Avonax® (interferon-1a) have been linked to increased depressive symptoms in the past. However, recent papers have cast some doubt on the strength of this association.
We recommend monitoring for depression and mood disorders and treatment of these as needed.
Goldlocket_2: Do you recommend a psychiatrist's intervention for treating depression related to the dx of MS?
Speaker_-_Dr__Alex_Rae-Grant: At the Mellen Center we will consider treating mild depression ourselves but often turn to a psychiatrist to assist with more complicated issues.
Debbar4: Gabapentin (Neurontin® ) is a great medicine, however, I have been on it for 6 to 8 months. Of course, as with all my other medicines, when "looking up" info on all of them Gabapetin was the only one with side effects that listed "hostility". The last couple of days I have noticed a very low, low mood when triggered. Any info? I did not take the Gab this a.m. Thank you!
Speaker_-_Dr__Alex_Rae-Grant: We use Gabapentin for burning or tingling sensations when they are bothersome. It has been used for other types of nerve pain also. Usual side effects include dizziness, fatigue and sometimes weight gain. We have not noticed 'hostility' to be a major side effect, but every person is different and we assess side effects on an individual basis.
Memory & Speech
Worried43: I am a 43 yr old female with Multiple Sclerosis for only 6 months now. I have lesions on my brain. What does this mean for real? Will I lose my memory or can't speak or what?
Speaker_-_Dr__Alex_Rae-Grant: The term 'lesions' on the brain just means that there are areas affected by the MS. Another word to describe this is ‘plaques’. These are usually areas where the myelin has been stripped off. However, we cannot look at the lesions and predict anything about the future course of MS. It is rare in MS to lose the ability to speak. Memory issues may occur in MS but usually do not interfere with activities.
BS1958: Regarding my 80 year old mother – she seems to be much more forgetful lately – forgetting chunks of time or not remembering things correctly – is this related to MS – or should we have her tested for other neurological changes?
Speaker_-_Dr__Alex_Rae-Grant: MS can affect memory and after years of MS may be a significant problem, however if there are rapid changes we would usually assess in the same way that we assess other memory problems.
Visual Disturbances with MS
4MSCure: My peripheral vision is affected and I am unable to drive. Will this symptom improve with Copaxone® (glatiramer acetate) treatment?
Speaker_-_Dr__Alex_Rae-Grant: None of the standard medicines specifically improve present symptoms of MS.
Davislaw: I was diagnosed with MS in Jan. 2009. I have also been diagnosed with optic neuritis and glaucoma. Is glaucoma common with MS?
Speaker_-_Dr__Alex_Rae-Grant: There does not seem to be any relationship between MS and glaucoma. Some people with MS have a condition called iritis which is another eye condition diagnosed by eye doctors.
Fatigue
fightingwithhope: I suffer extreme fatigue with my MS. My insurance does not cover most that could help. So, my neurologist put me on 20mg of Ritalin twice a day. I just started it one week ago. Should I know if it is helping me now? Some days I think it is and others days I am not sure.
Speaker_-_Dr__Alex_Rae-Grant: Fatigue is the most common symptom of Multiple Sclerosis occurring at some time in 90% of patients with MS. Some people describe this to be similar to having a virus all the time. Making sure that you have good sleep hygiene, avoiding alcohol and sedatives, and getting regular exercise are all things that you can do that may help.
At the Mellen Center we will try if necessary a medication which has an effect on fatigue. Medicines that we have tried include Amantadine (Symmetrel ®), Provigil® (Modafinil), Adderall®, Ritalin® (Metadate) and recently Nuvigil® (Armodafinil). All these medicines have side effects and need to be prescribed with caution. None of them are FDA approved for treating MS symptoms as no manufacturers ever requested FDA approval for use with MS.
Pain & Muscle Issues of MS
jo: I get stiffness in feet/knees/legs after an hour. I take Baclofen twice daily. I also exercise daily and I am active but stiffness/balance is a real problem. What could I take or do?
Speaker_-_Dr__Alex_Rae-Grant: Stiffness is common in Multiple Sclerosis. Some people experience a tight sensation in the muscles and sometimes get muscle cramping. Regular stretching and exercise seem to be helpful.
We tend to use Lioresal® (Baclofen) as the first medication for this symptom. We gradually increase the dose over time. Some people may need 3-4 doses per day, sometimes more. This is not a medicine to suddenly start or stop as there can be significant side effects in doing so.
An alternative medicine is Zanaflex® (Tizanidine) which in some patients may work differently that the Lioresal® (Baclofen ). If these types of approaches fail, we have a Spasticity Management Program at Cleveland Clinic which offers therapy. Sometimes Baclofen pump treatments or Botox injections are used.
ssparr: I am diagnosed with possible MS at this point. I'm still trying to understand episodes as they are defined as 2 days or more of any one symptom. What about symptoms that involve muscle control? For example, if I have bouts with loss of muscle control where my leg will shake uncontrollably but this instance only came in short bursts 5 times in one evening lasting 5 min. or less with each bouncing shake (from my thigh to foot) throughout one evening so far. Is this considered an MS episode?
Speaker_-_Dr__Alex_Rae-Grant: About 20% of patients with MS at some time during their course develop transient neurological symptoms. These typically last a few seconds at a time but may reoccur hundreds of times a day. We call these transient neurological events.
Transient neurological events may cause tingling, jerking of the muscles, shaking, weakness and double vision. They sometimes occur when a person is having a relapse. They may also occur separate from the relapse. These events are due to short circuiting of the nerve fibers in the brain and spinal cord. They tend to get better on their own over a few weeks period of time.
ssparr: I've read a lot recently that some doctors associate pain to Multiple Sclerosis and others do not. Does the Mellen Center associate pain to MS? Is pain (fibromyalgia) really a symptom of MS?
Speaker_-_Dr__Alex_Rae-Grant: There are a number of studies over the past 15 years that have shown that about 30% of people with MS have various kinds of pain. Some of these pains are similar to the pain that other people may experience, such as low back pain or headaches.
There are other types of pain however more specific to Multiple Sclerosis. For example, some people may get jabbing facial pain known as trigeminal neuralgia. And some people get burning or tight pain in their legs or arms related to MS.
Fibromyalgia type pain is not a specific symptom of MS but can occur in people with MS.
fightingwithhope: 29 year old female diagnosed with Relapsing Remitting MS (RRMS) Feb 2006 . I just had my second daughter in April. I also began Betaseron® for the first time at the end of May. It has been very difficult and making quality of life with two small children hard. It is hard doing a shot every other night and the side effects are really hard still. Due to side effects I am still having red welts, nausea, headaches and am working full time etc. My neurologist says I am a candidate for Tysabri® now. Can you please give me your thoughts on Tysabri®? Thanks!
Speaker_-_Dr__Alex_Rae-Grant: Tysabri® (Natalizumab) is a powerful medication for treating MS. However it has significant risks specifically of allowing a severe brain infection called PML to arise. At present it appears that this occurs in 1:1000 patients on Tysabri® (Natalizumab).
We therefore use Tysabri® (Natalizumab) in patients who have not responded to standard medicines or who have very rapidly changing MS. In general, we will try more than one of the 4 standard medicines before we try Tysabri® (Natalizumab).
fightingwithhope: Do you think an oral pill will be out by December 2010?
Speaker_-_Dr__Alex_Rae-Grant: There are a number of oral medicines in the pipeline for MS. We expect to hear about two of them within the next year as the FDA will be looking at them. We will need to see the safety and effect of these medicines before deciding how to use them.
Marcysss: I have excruciating and unbearable nerve pain for several months and my neurologist referred me to a pain management doctor who has been treating me unsuccessfully. What kind of treatment is out there for pain with Multiple Sclerosis?
Speaker_-_Dr__Alex_Rae-Grant: Occasionally patients with MS can experience severe pain that can be difficult to treat. There are a variety of ways to approach this. Each pain management center has its own approaches. There is no specific medicine that we use for pain.
Medicines for seizures, anti-depressants and sometimes long acting pain medicines alone or in combination are often what is used to treat pain. If pain is failing all medical approaches, sometimes we consider spinal cord stimulation or a pain pump.
Numbness & Tingling
SAGE6060: I had a relapse starting 8/9/2009. Numb back stomach, hands and legs. Doctor put me on oral steroids for about 8 days. No change. Then went on IV for 5 days. Still not alot of change. Back on oral steroids to wean me off. My question is I have had since beginning of relapse the famous bear hug around stomach. No worse but no better. I am wondering if you think it is permanent? Tightest makes wear normal lady item hard and it hurts my back. Do not know if Chiropractor could help with back but insurance does not cover. 45 yr old woman. Take Copaxone® since dx on 8/1/2000.
Speaker_-_Dr__Alex_Rae-Grant: Some people with MS get a tight feeling that wraps around their abdomen or chest. This is sometimes called an "MS hug". This may go along with problems in the back or the spinal cord. This will often come and go. Sometimes treatment with Lioresal® (Baclofen) may help this.
ssparr: If the numbness and/or tingly feeling come & go can there be any relief? Is there treatment?
Speaker_-_Dr__Alex_Rae-Grant: Loss of feeling related to MS also known as numbness cannot be specifically treated with medication. However, tingling, burning, and unpleasant feelings may respond to medicines that alter nerve signals. These include medicines such as Gabapentin (Neurontin ®), etc.
SallyB: I have been feeling numbness and tingling in my hand lately and sometimes I have difficulty writing. How do you know if this is an MS symptom or carpal tunnel? When do you know to have things checked out?
Speaker_-_Dr__Alex_Rae-Grant: Carpal tunnel syndrome (CTS) is due to compression of the median nerve in the wrist. Symptoms include tingling in the hand and up the arm, dropping objects, difficulty opening jars and sometimes numbness or pain at night. It can at times be difficult to determine if carpal tunnel is present or if the hand symptoms are related to MS. In these situations we will often do a nerve conduction study which helps diagnose CTS.
Alcohol & MS
Bewlah: Is it bad for someone with MS to drink alcohol? Does it make the MS symptoms worse?
Speaker_-_Dr__Alex_Rae-Grant: Alcohol in excess is a bad idea even without MS. People with MS often feel the effect of alcohol more strongly than others and may be more at risk for falling etc. Having said this, moderate alcohol has not been shown to cause a worsening of MS.
Other Therapies for MS Symptoms
benandgert: Are there other methods of pain management rather than meds?
Speaker_-_Dr__Alex_Rae-Grant: There are many ways to try to treat pain besides medications. Examples include: relaxation therapy, biofeedback, acupuncture, exercise and yoga. There is a Chronic Pain Management Program at the Cleveland Clinic which focuses on non-medication approaches to pain.
pierrelima: My son recently had an excellent appointment at your Clinic that confirmed he has MS. Since he started having Avonex® treatment, he says he feels much better. Is that possible? As far as I know Avonex® and similar treatments just "block" the disease, isn't a cure.
Speaker_-_Dr__Alex_Rae-Grant: None of the present standard medicines for MS either grow the nerves back or restore function. However, we know that the nervous system can repair itself to a certain degree and many patients who have MS attacks will improve spontaneously.
Also, if we take a group of people and put them on the medicines, most will feel the same, some may feel worse but some may feel better. But we are really looking with the medicines to prevent new problems in the future not to improve the present symptoms.
pierrelima: I'm so sorry to insist, but is the new MS curative medicine based on T4 cells still planned to be released this year ? Thank you.
Speaker_-_Dr__Alex_Rae-Grant: I do not know what specific medicine you are referring to since there are many medicines that are effective against T cells. The medicine closest to FDA decision is Cladribine which is an oral pill medicine. None of the medicines in the pipeline "cure" MS. However, it is also good to remember that no medicines "cure" high blood pressure, heart disease, arthritis or diabetes either. The medications only manage the disease.
Closing
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Rae-Grant is now over. Thank you again Dr. Rae-Grant for taking the time to answer our questions about Multiple Sclerosis and symptom management today.
Speaker_-_Dr__Alex_Rae-Grant: I am sorry I was unable to answer all of your questions. Thank you for participating.
More Information
- To make an appointment with Dr. Alex Rae-Grant, or any of the other specialists in our Mellen Center for Multiple Sclerosis and Treatment in the Neurological Institute at Cleveland Clinic, please call 216.636.5860 or toll-free 866.588.2264; visit us online at www.clevelandclinic.org/mellen
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This chat occured on August 31, 2009.
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