Introduction
Cleveland_Clinic_Host: Multiple Sclerosis 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. MS affects 2-3 times as many women as men and its occurrence is unusual before adolescence. The Mellen Center at Cleveland Clinic is the largest and most comprehensive program for MS 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. Alex 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 in 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. Rae-Grant, or any of the other specialists in our Mellen Center for Multiple Sclerosis Treatment at Cleveland Clinic, please call 216.444.8601 or toll free 1.800.223.2273 ext 48601 or visit www.clevelandclinic.org/mellen.
Cleveland_Clinic_Host: 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 neurology and specializes in the care of patients with multiple sclerosis. Let’s begin with some general questions about Multiple Sclerosis.
Multiple Sclerosis Overview & Diagnosis
stubs0505: I am a 46yo woman just diagnosed last fall with MS and I have had 3 "exacerbations" since then- these being a headache that encompasses nearly my entire head and terrible pain shooting from my spine, along with a painful spine. Along with these, I have been failing with all of the "invisible symptoms"-cognition, bladder and bowel control, muscle weakness, tremors, blurry vision, dysesthesia blah, blah, blah. Sorry for the complaints. My question (and my fear) is do you think I have PPMS? I know you can't properly diagnose me, but I'd like your expert opinion please.
Speaker_-_Dr__Alex_Rae-Grant: A number of people with MS have headaches and pain. In general we treat these symptoms on their own merits. Sometimes if the headaches are difficult, we will work with a headache specialist.
Headaches, pain and invisible symptoms do not tell us anything about the type of MS. PPMS (primary progressive MS) is a form of MS where patients gradually worsen over time and do not have flares of MS.
LGK54: We know that MS has been recognized as a disease long before the technology of MRI's and O-band testing were developed. Can you talk a bit about diagnosing that small percentage of MS patients who do not show lesions on their MRI's or O-Bands in their CSF? On what evidence is the clinical diagnosis made? Thanks.
Speaker_-_Dr__Alex_Rae-Grant: MS continues to be a diagnosis which is primarily based on the history and physical examination. All the other testing we perform helps to support the diagnosis.
Having said that, in general if a good quality MRI scan of the brain and entire spinal cord does not show any suggestion of MS, we are very hesitant to make the diagnosis and carefully screen for other diseases which could be causing the symptoms.
doublevision1_2: What is currently the most effective treatment for neuromyelitis optica?
Speaker_-_Dr__Alex_Rae-Grant: This is a condition which is likely related to MS, but which is being separated out in treatment. There is now a blood test to check for this which is positive in 70% of people with NMO. People with this disease often have vision problems and problems with spinal cord function. All of the treatment information in this disease comes from case studies and not from randomized trials.
We tend to start treatment with steroids and Azathioprine(Imuran®) and then consider other treatments depending on the response.
CareBayer: Primary Progressive MS, can you offer some clarity on it? How is it diagnosed if a person has many MS like symptoms, but without any relapses or lesions on the brain or cervical spine? Thank you in advance if you are able to answer of even touch on my subject.
Speaker_-_Dr__Alex_Rae-Grant: PPMS is diagnosed in patients who have a gradual progressive course. It tends to affect walking and balance. We diagnose this by the history and physical exam. Patients with PPMS show the same kinds of MRI lesions and spinal fluid changes as other forms of MS.
spartans: An Evoked Visual Potentials test showed both optic nerves are compromised. Is this a long-term issue?
Speaker_-_Dr__Alex_Rae-Grant: The visual evoked potential test is helpful in showing abnormalities in the optic nerves. However it does not in any way predict how vision will be in the future or whether optic nerve problems will reoccur.
spartans: Would you advise a Shingles vaccine in someone with mild MS?
Speaker_-_Dr__Alex_Rae-Grant: At present there are no recommendations about this particular vaccine in MS.
spartans: Could exposure to carbon monoxide fumes or carbon tetrachloride cause MS identified in lesions on an MRI?
Speaker_-_Dr__Alex_Rae-Grant: There are no specific toxins that cause MS-like lesions in the brain. Carbon monoxide gives a very different appearance on MRI scan. Some medications that affect the immune system may make MS more likely. These are medicines used in Rheumatoid Arthritis and certain bowel diseases.
spartawife56_2: Do you have a physician that specializes in the treatment of Spinal Muscular Atrophy?
Speaker_-_Dr__Alex_Rae-Grant: Please contact the Department of Neurology (216.636.5860 or toll free 866.588.2264) for this information. We do have specialist for this particular condition.
foxhalc: What is the likelihood that a person was misdiagnosed with MS?
Speaker_-_Dr__Alex_Rae-Grant: Because MS can be difficult to diagnose, sometimes the diagnosis is made in someone who really does not have it. There are no statistics on how likely a misdiagnosis occurs.
Multiple Sclerosis Symptoms
goldlocket: Can using heating pads or hair dryers initiate a flare or increase symptom of MS?
Speaker_-_Dr__Alex_Rae-Grant: Some patient's with MS are heat sensitive. Many are not. If people have more symptoms with heat, this does not usually indicate a worsening of the disease or a flare of MS. You would have to see how the symptoms are and whether these symptoms are a problem. You could also try using a blow dryer on a cool setting.
BLANDBB_2: I have found very little information on the Internet about genital itching related to MS. Is this something that is not discussed, or do few MS patients experience this?
Speaker_-_Dr__Alex_Rae-Grant: Itchy patches anywhere on the body are seen as a sensory symptom of MS. They can come and go over time. We have sometimes used Gabapentin (Neurontin®) for symptoms similar to this with benefit.
BLANDBB_2: I have RRMS. I have the "girdling" around my torso, and numbness in my hands and feet. I am just starting injection therapy with Copaxone®(generic Glatiramer Acetate.) Is it possible that some or any of these symptoms will subside as a result of the injections?
Speaker_-_Dr__Alex_Rae-Grant: With starting any of the standard medications for MS, a certain % of patients will notice improvement. The nervous system can also restore function on its own and so there is a chance of improvement of the numbness.
stubs0505: I am a white 46yo old woman diagnosed just last November and I am planning to get my Masters. However, I have steadily been declining in my ability to recall, spell, add, comprehend, concentrate, etc., and I am very frightened. This actually started even before I was diagnosed. What should I do?
Speaker_-_Dr__Alex_Rae-Grant: Occasionally people with MS have cognitive symptoms as the main problem. However this can be very complicated to sort out. Sometimes, these changes are due to medications, lack of sleep, depression or anxiety and do not necessarily indicate injury from MS.
We usually would consider having Neuro-Psychological testing done to help with such problems. Sometimes, we will consider using medicines for memory problems that most neurologists are comfortable using.
Piper8: How does the menstruation cycle and menopause effect MS symptoms? Is there research on this?
Speaker_-_Dr__Alex_Rae-Grant: Some women notice that their symptoms of MS increase around the time of menstruation. There is little information on the effect of menopause. There are groups working on understanding the relation between hormones and MS at the present time. Presently we are not using hormonal therapy for MS. You should discuss with your gynecologist for treatment of menopausal symptoms.
bdbachoroski: Hello, Dr. Rae-Grant, I am curious as to what are the most common initial symptoms for Primary Progressive MS (PPMS)? Also, what is in the research pipeline for stem cell treatments of MS? Thank you for your valuable time and information.
Speaker_-_Dr__Alex_Rae-Grant: The usual first symptoms for PPMS are weakness or numbness in one or both legs and a gradual problem with walking distances. As I will discuss later, there are studies in the pipeline using stem cells.
kraggy: The base of the skull in the back of my head (the bone)gets really sore, like someone beat me and it feels bruised. It's sore when you press on it. Is this a MS thing? I get this at least once a week.
Speaker_-_Dr__Alex_Rae-Grant: Headache or head pain can occur in MS. Of course, there are also other reasons why people may experience head pain as well. We try to make sure that there is nothing else going on. In general, we treat headache pain in patients with MS the same way we do for people with headache in people without MS.
Multiple Sclerosis Treatment Options
rkgm: What is the most effective treatment for MS that you'd recommend? Is there a cure on the way?
Speaker_-_Dr__Alex_Rae-Grant: There are 4 standard medications for relapsing MS at the present time. There are arguments for and against each of these medicines. None of the medicines is clearly better than the others. Most of the decision about which medicine to use comes down to convenience, side effects and personal preference.
At the Mellen Center at Cleveland Clinic, we are more focused on getting treatment started and then carefully monitoring how each person does.
blue: Do you think acupuncture is an effective treatment/aid for relapsing MS?
Speaker_-_Dr__Alex_Rae-Grant: Acupuncture has been used in many different types of pain syndromes with benefit. It is therefore reasonable approach to pain in the setting of MS. There is no evidence at present that acupuncture has any effect on the disease course of MS.
Piper8: If you have already been diagnosed with MS through brain MRI's, are spinal cord MRI's necessary and/or helpful?
Speaker_-_Dr__Alex_Rae-Grant: We will consider doing MRI of the spine when the MRI of the brain is not diagnostic. We will also image the spinal cord if we are concerned that there may be another disease injuring the spinal cord. For example, some people may have compression of the spinal cord due to arthritis of the spine.
In other cases, the MRI of the brain gives us all the information we need.
monotreme: I have had a brain MRI done in 2002 after a seizure which showed T2 hyperintense lesions. I had a new brain MRI last week since I am seeing bright flashes of light. This current brain MRI showed increased number of T2 hyperintensities in the periventricular and subcortical areas, T1 hypointense lesions, and lesions in the corpus callosum. I have no weakness or fatigue or pain. My neuro exam is normal according to the neurologist. Can you have MS with no symptoms? Should the lesions warrant treatment?
Speaker_-_Dr__Alex_Rae-Grant: Recently, we and others have seen patient's who do not have traditional symptoms of MS or exam findings of MS. And yet the MRI scan appears characteristic for demyelination.
There have been a few case series in patient's of this type. A percentage of such patient's over the next few years do develop MS symptoms. In general we tend to follow these patients closely and consider treatments if either the symptoms or the MRI show significant activity.
mikemd: It is generally believed that MS is a T-cell mediated autoimmune disease. So, why are treatments that target only B-cells, like Rituxan® (Generic Name: Rituximab) and ocrelizumab, being tried?
Speaker_-_Dr__Alex_Rae-Grant: Our thoughts are changing about this disease every day. We now think the B-cells may be just as important as T-cells. And we know that a number of B-cell treatments are helpful.
doublevision1: Is Sativex® (medical marijuana) an effective drug to treat MS pain?
Speaker_-_Dr__Alex_Rae-Grant: There are a number of research studies on marijuana-related compounds.. Some of these trials indicate an improvement of MS related symptoms, but the jury is still out. At present, Sativex® (medical marijuana) is not FDA approved for MS treatment.
doublevision1: What dosage of Vitamin D is safe yet effective in possibly reducing risk for autoimmune diseases such as MS?
Speaker_-_Dr__Alex_Rae-Grant: No one at the present time knows the right dose of Vitamin D that is effective for the immune system. We are not sure at the present time that treating with Vitamin D has any benefit in MS. Our present recommendation is to use 1000mg daily of Vitamin D3 as this appears to be safe and is a reasonable dose for bone health. Please check with your primary physician.
Multiple Sclerosis Medications
blue: With several medications out there, how do I know my doctor put me on the best type of medicine for me?
Speaker_-_Dr__Alex_Rae-Grant: It is an individual choice and all of them work similarly, so I would not worry about the specifics of each one.
BLANDBB_2: I have RRMS (Relapsing/Remitting Multiple Sclerosis.) Is there is a distinct advantage/difference in the injection therapies? I have researched each and find that information about each product is highly promoted by its own company. Neurologists tend to let the MS patient choose, which is good, but I would like more specific information about how the therapies work.
Speaker_-_Dr__Alex_Rae-Grant: The interferon’s as a group have a variety of effects on the immune system. They seem to reduce inflammation in the body and in the nervous system which helps reduce MS activity. They also make it harder for white blood cells to enter the brain.
Glatiramer Acetate seems to mimic myelin so that immune cells attack the medicine and not the brain's myelin.
blue: I am a 47-year old male with relapsing MS, and I am currently on Rebif®. As Copaxine's mechanism of action is different, are there any benefits to be on a combination of both Rebif ® and Copaxine® (or combined with other MS medicine)?
Speaker_-_Dr__Alex_Rae-Grant: There is presently a very large study called Combirex® which is looking at whether combining an interferon and glatiramer acetate together is better than each medicine alone. We do not have the final result of this important study.
Because of this we do not combine these medicines at the present time.
sitawhile: Is there any correlation between Copaxone® and depression? I definitely understand correlational/causational nature of MS/depression, but wonder if there is more? Second, what does the neurologist want to know? What's important?
Speaker_-_Dr__Alex_Rae-Grant: There does not appear to be any relationship between Copaxone® and depression. We do know that MS and depression are strongly linked. No one yet knows why. It is possibly that depression activates the immune system and could increase MS activity. In general we treat depression symptoms with standard anti-depressant medications and therapy when needed.
Multiple Sclerosis and Intimate Relations
blue: What can I do to keep MS from affecting my sex life? What can I do to improve/restore my sex drive? What about topical testosterone?
Speaker_-_Dr__Alex_Rae-Grant: Sexual function is an important area that is often hard for doctors and patients to discuss comfortably. We know that many patients with MS both female and male can develop problems with sexual functioning.
There is a wonderful publication from the National MS Society called "Intimacy and Sexuality in MS." It can be downloaded online.
blue: Does topical testosterone work for someone with MS? Would testosterone treatment be effective to improve the drive? Or any other treatment you recommend?
Speaker_-_Dr__Alex_Rae-Grant: There is limited information about topical testosterone in MS. The small studies that have been done have had mixed results. In general, for males medications such as Viagra have been helpful.
For females, lubricants and sometimes stimulators and a focus on romantic environment (lighting, candles, music etc) seem to be helpful.
Multiple Sclerosis and Family
rkgm: I am in love with someone who has relapsing MS. I have read some about it, and I am eager to learn about MS as much as I can. I love him and I want to be of all the help and support I can be for him. What I have read in the support groups sound inspirational and somewhat adorned, but I want to know realistically, what's in store for me and how can I manage it the best for both of us, as his MS worsens in the future? I need to know realistically what to expect...
Speaker_-_Dr__Alex_Rae-Grant: We feel it is very important for people with MS and their significant others to have all the information that they need to understand Multiple Sclerosis. There are many resources on the Internet and the National MS Society website is an excellent place to start. Often, the National MS Society has newly diagnosed programs which you may attend.
The Mellen Center at Cleveland Clinic also has an abundance of health information about Multiple Sclerosis. The website for educational materials is www.clevelandclinic.org/MSeducation
At the Mellen Center we have a newly diagnosed class that meets every two months. You can contact the Mellen Center for information on this.
Multiple Sclerosis Stem Cell Discussion
blue: Is adult stem cell treatment effective for relapsing MS? Do you recommend trying to volunteer for the adult stem cell research? If so, what are my chances of being a candidate?
Speaker_-_Dr__Alex_Rae-Grant: There are different approaches to stem cell treatment that are being developed. At the Mellen Center, we are developing a study using mesenchymal stem cells but this is just getting started.
At present, the only published research in MS in on bone marrow transplantation in which the patient's own stem cells are returned to the body after intensive chemotherapy.
This last treatment is very aggressive and used only for very severe and active Multiple Sclerosis.
LISABUCK: What are your thoughts on Stem Cell Replacement?
Speaker_-_Dr__Alex_Rae-Grant: There are centers around the world that for a price will inject "stem cells" in many different kinds of patients. Unfortunately, at present we do not have information of a scientific nature about the results of such therapies. For this reason, we do not recommend stem cell replacement outside of a research study.
spartans: Do you feel any promising stem cell research is near enough that somebody might delay taking MS drugs?
Speaker_-_Dr__Alex_Rae-Grant: As stated earlier, stem cell research is very promising but we are still waiting for results.
Multiple Sclerosis Research
debbar4: Am very interested in a MS clinical trial that Cleveland Clinic is doing. Any pointers, other than meeting the criteria, on getting in the trial?
Speaker_-_Dr__Alex_Rae-Grant: We have more information available at clevelandclinic.org/mellencenter under the research and clinical trials sections. This site also has contact information.
debbar4: If a Phase 1 clinical trial is successful, and the trial continues w/success (all 4 phases), OR stops at Phase 3, do the participants in the Phase 1 trial given the chance to continue with all Phases, or at least through its success?
Speaker_-_Dr__Alex_Rae-Grant: Every research study is organized differently than others. Therefore, participants in any study may or may not be able to continue on the study medication depending on the specifics of that individual study.
Closing
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Alex Rae-Grant is now over. Thank you again Dr. Rae-Grant for taking the time to answer our questions today.
Speaker_-_Dr__Alex_Rae-Grant: Thank you for all of your interest. I am sorry that I was unable to get to all of the questions. We are planning another MS Chat at the end of August. Please check back on our website.
More Information
For more information about Cleveland Clinic Neurological Institute Mellen Center for Multiple Sclerosis Treatment, you may visit clevelandclinic.org/Mellen. To make an appointment with Dr. Rae-Grant, or any of the other specialists in our Mellen Center for Multiple Sclerosis Treatment at Cleveland Clinic, please call 216.444.8601 or toll free 1.800.223.2273 ext 48601 or visit www.clevelandclinic.org/mellen
- To download educational materials www.clevelandclinic.org/MSeducation
- Some interesting articles about this topic from Cleveland Clinic may be found at the following links:
- A remote second opinion may also be requested from Cleveland Clinic through the secure eCleveland Clinic MyConsult website. To request a remote second opinion, visit eclevelandclinic.org/myConsult.
- If you need more information, contact us, chat online or call the Center for Consumer Health Information at 216.444.3771 or toll-free at 800.223.2272 ext. 4-3771 to speak with a Health Educator. We would be happy to help you. Let us know if you want us to let you know about future web chat events!
- Some participants have asked about upcoming web chat topics. If you would like to suggest topics for 2009, please use our contact link clevelandclinic.org/webcontact.
This chat occurred on April 6, 2009.
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