Multiple Sclerosis FAQs
Is multiple sclerosis contagious or fatal?
MS is neither contagious nor fatal. People with MS have a life expectancy that is not really any different from the general population. The leading causes of death in the MS community are heart disease, cancer, and stroke. MS tends to affect quality of life, not quantity of life. There are unusual variants of MS than can be very aggressive and potentially shorten life, but these are not the norm.
What are the most common symptoms of MS?
The most common characteristics of MS include fatigue, weakness, spasticity, balance problems, bladder and bowel problems, numbness, vision loss, tremor and vertigo. Not all symptoms affect all MS patients and symptoms and signs may be persistent or may cease from time to time.
Because the signs and symptoms that define the clinical picture of MS are the result of nerve lesions causing disturbances in electrical conduction in one or more areas of the central nervous system, the nature of the symptoms that occur is determined by the location of the lesion.
Why do doctors feel that I am imagining my symptoms?
In the beginning phases of multiple sclerosis, diagnostic tests, such as MRI's, may be negative but the patient may experience subjective sensory symptoms. These symptoms can include numbness, tingling, or fatigue, and will not be seen on diagnostic tests. This leads doctors to believe there is no illness or that anxiety is present. You should also know that a clinical diagnosis of MS may take years. Often a physician observes a person over a period of time before reaching a diagnosis of MS. Neurologists are generally consulted and diagnostic tests such as MRI's, evoked response potential, and others may be used to help with a diagnosis.
If you are not sure you have MS, don't be afraid to ask questions and to find out more about feelings and symptoms. Do not let symptoms continue without further investigation.
Am I going to end up in a wheelchair?
The natural course of MS is highly variable, and it is impossible to predict the nature, severity or timing of progression in a given patient. Some people with MS will have a more progressive disease course than others.
In some cases, the course of MS over the first five years may provide a clue to the progression of the disease over the next 10 years. Recent studies indicate that 90% of patients with minimal disability five years after onset were still ambulatory at 15 years. It is estimated that at 20 years after diagnosis, about 1/3 of people who receive no treatment may require a wheelchair or other assistive device.
With the present immunomodulatory therapies, the goal is to slow the progression of disability. Some people with MS respond quite well and may have no progression over years. For others, the treatment may slow, but not stop the progression. It is important to be proactive and work with your healthcare provider in order to obtain the most appropriate treatment, thus obtaining the highest level of benefit.
What options can help me?
Early treatment makes a difference. The necessity for early treatment in MS is becoming increasingly clearer. The time has passed for the “let’s wait and see how it goes” attitude before treatment is begun. The message is that early treatment seems to delay disability presumably by decreasing the injury to the nervous system by the multiple sclerosis. The drugs used for treating MS are currently: Avonex, Betaseron, Copaxone, Tysabri or Novantrone. Another option is alternative healing modalities. Many people find a combination of the two choices can achieve the best results.
Does diet affect multiple sclerosis?
Although diet is not currently considered a causative factor in MS, anecdotal evidence abounds from individuals with MS who have experienced health benefits by changing their diet. Eating consistently well over a period of time may help reduce fatigue, improve bladder and bowel problems, increase energy, and prevent bone loss. It may also positively impact mental and emotional health, including memory and concentration.
To learn more, request a copy of Nutrition & MS by calling 1-888-MSFOCUS (673-6287).
Does stress affect multiple sclerosis?
By understanding some of the psychological changes that accompany chronic disease, one may take an active role to achieve a more healthy mental state. Psychotherapy or counseling, and body cooling are ways one can relieve stress. Some prefer alternative treatment options, including relaxation techniques (exercise, yoga, massage therapy, meditation, biofeedback, and music) to learn ways to manage unavoidable stress. With MS, the stress that must be managed is the “distress” that may hamper our ability to cope with the events and people in our lives.
Can I get pregnant though I have MS?
For a woman with MS, the decision to have a baby can be more difficult. MS does not hinder a woman’s chance of becoming pregnant and carrying a child to full term. MS is only another factor in one’s decision to have a child, not the only one. Planning the pregnancy and getting all the information you need can make the decision process easier.
Together with your partner, visit your neurologist and discuss current disease activity and possible progression. With a bit of flexibility and a creative, proactive approach on the part of both parents, solutions to various challenges presented by MS are attainable. Attend a local MS support group meeting and talk to others who are successfully parenting with MS.
To learn more, request a copy of Pregnancy for Women with MS by calling 1-888-MSFOCUS (673-6287).
Will a wasps sting in the head
at 10yrs of age, now 30 years later
cause MS?
Will hookworms wrap around your intestine for several months, causes MS? ( they lived in me for 5 months)
My mother had Malaria, when she was 9 years old.
Would that be, why I have MS?
Dear Ms. Ward,
At the present time, there is no exact cause of MS. It is believed by researchers that a combination of several factors may be involved. If you would like to know more about these factors, please view this link to our website that lists articles pertaining to the search for a cause:
http://www.msfocus.org/search-for-causes.aspx
Thank you for your inquiry to the MSF.
Support Team
when does it worse?? i have had numbess in my face for 4weeks and 2 days when will it go away??
Thank you for your inquiry to the MSF. MS is a very individualized disease and no two people experience the same symptoms. Perhaps you should consult with your physician in regard to your present specific symptoms and possible treatment options or suggestions. You may wish to read more about coping with MS and symptom management by viewing this link to our website: http://www.msfocus.org/coping-with-multiple-sclerosis.aspx
my mom and my uncle have ms what is the probability that any of my moms 5 children will get ms?? also i am trying to do a report on the effects of multiple sclerosis on family. i know when i was first told by my mom that she had ms i didnt know what it was. i was confused. are there any programs for children whose parents have ms?
Dear Ms. Cox,
Thank you for your question to the MS Foundation. You may view information and articles on our website regarding MS and genetic factors. Here are the direct links:
http://www.msfocus.org/search-for-causes.aspx
http://www.msfocus.org/causes-multiple-sclerosis.aspx
If you are unable to view the links. You may find the information on our website www.msfocus.org, under the Learn about MS , then “What causes MS” ; Coping with MS, then “Search for causes, treatments, and a cure”, then “17 articles – The genetic connections.”
Please give us a call in regard to your question about possible programs for children of parents whom have been diagnosed with MS.
Thank you.
MSF Support Team
Hello,
My friend received a diagnosis of MS today. What can I do for her?
Dear Ms. Geiger,
Thank you for your inquiry to the MS Foundation.
Please give us a call at 888-673-6287. This is a toll-free number, you will be able to speak directly to a Support Team Memeber.
My daughter, 38 yrs old, just got diagnosed, and while I was reading about it, one Dr. said MS has a life span of 15 to 20 years. What does that refer to????
thank you
Marie Devlin marield65@yahoo.com
Dear Ms. Delvin,
Thank you for your inquiry to the MS Foundation.
You may like to view information on our website pertaining to what is MS and coping with MS.
Here are the direct links:
http://www.msfocus.org/learn-about-multiple-sclerosis.aspx
http://www.msfocus.org/coping-with-multiple-sclerosis.aspx
MS is considered to be a chronic neurological disease that manifests in different ways in different people.
You may call the MSF directly at 888-673-6287 and we can mail you additional information regarding MS as well as answer additional questions.
Daughter just found out she has ms.I have many symptoms but not diagnosed.is it inherited.
Dear Ms. Bowen,
Thank you for contacting the MS Foundation and for your question regarding MS and is it hereditary? You may view information regarding MS and genetic factors on our webiste by viewing the following link: http://www.msfocus.org/causes-multiple-sclerosis.aspx. You may also give our program serivces support team a call to learn more about MS or to receive information about the MSF and the services we offer.
I want to know what are the risks in taking the new pill Gylenia.
Dear Mr. Zulma,
For information pertaining to Gylenia, you may visit www.Gilenya.com or call 1-877-408-4974.
Thank you for your inquiry to the MSF.
Support Team
Is there treatment or medication for the fatigue associated with MS. I awaken feeling wonderful, then a few hours later, I'm very tired.
Dear Ms Costantino,
Please contact the MSF directly at 888-673-6287, for information regarding your request.
Thank you for your inquiry to the MSF.
Support Team
I have RRMS, what are the chances of my son being diagnosed with Juvinile Diabetes?
Dear Ms. Swist,
Thank you for your inquiry to the MS Foundation. Please contact the MS Foundation at 888-673-6287 in regard to your inquiry.
Thank you.
MSF Support Team
Are the hot flash type episodes normal.Or is this something that is unrelated. I am so hot most of the time and sweat alot.
Dear Ms. Brown,
The symptoms that you are experiencing may be related to heat intolerance, a common MS symptom. If you would like to receive information about heat intolerance, please call 888-673-6287 to make a request. If you believe you may be experiencing hot flashes, you perhaps should consult with your doctor concerning your symptoms.
Thanks you for your inquiry to the MS Foundation.
I would like information on the most effective cooling devices available for people with MS. Prices range from $5.00 to close to $200. What have people with MS found to be the most effective?
Thank you for your inquiry to the MSF.
Could you please contact the MSF at 888-673-6287 regarding your request.
Thank you.
MSF Support Team
I need to be linked to a doctor that offers a sliding scale due to I have no insurance. I live in GA
Dear Ms. Gipson,
Please contact the MS Foundation at 888-673-6287 if you would like to obtain a listing of neurology or MS centers near to you. You will need to inquire with the centers to find out if they offer sliding scale fees. If you are interested in learning more about a program offered through the MSF that may be able to assist with a one time office visit and follow up visit, you may call and request to speak with a program service caseworker.
Thank you for your inquiry.
I am looking for the name of a neurologist in the Kansas City area that specializes in diagnosing MS. I have had multiple diagnoses that don't completely fit, and many of the symptoms of MS. I would like to be evaluated to find out if it's a possibility. Thanks.
Dear Ms. Clayton,
Thank you for your inquiry to the MS Foundation. If you would like to obtain a listing for MS Centers or Neurology Centers near to you, please contact us directly at 888-673-6287 so that we may best assist you with your request.
I have significant pain in the vicinity of T2-T7. When the pain first appeared, Mri's revealed new MS lesions in precisely the area (s) where I experienced new pain. Two or three times I could predict where the new 'lesions' were and the imaging confirmed my sense. Another radiologist dismissed the validity of the "lesions" on my spine. My question is: Do atypical MS lesions on the cord cause proximate pain? I have taken pain meds for 6 years, and have had to limit all activities as the result of this pain which remains (definitively)un- diagnosed
Dear Ms. Bertolet,
Thank you for contacting the MS Foundation.
Please contact the MSF Support Team at 888-673-6287, regarding your inquiry.
Is someone with Malignant Hyperthermia susceptible to Multiple Sclerosis
Dear Ms. Palmer,
The exact cause of MS is unknown. If you would like to learn more about what causes MS, you may view this link on our website: http://www.msfocus.org/causes-multiple-sclerosis.aspx . You may also contact the MSF at 888-673-6287 for additional information about MS, causes, determining clinical daignosis, etc. Thank you for your inquiry to the MSF.
Support Team.
Stem Cell Research for Multiple Sclerosis
Is it a cure?
Dear Ms. Wright,
Thank you for your inquiry to the MS Foundation. You may be interested in reading this article provided on our website: http://www.msfocus.org/search-for-causes.aspx . If you are unble to access the article via this link, you can find it under "Coping with MS", "The Search for Causes, Treatments, and a Cure", and then "Stem Cells May Show Promise for People with Rapidly Progressing MS."
Any research to reverse damage done
Jneuralicarnes
Hello Ms. Terrano,
Thank you for your inquiry to the MS Foundation.
Can you please contact the MS Foundation at 888-673-6287 in regard to your question?
MS Support Team
Is sleep apena a symptom or side effect of Multiple Sclerosis
Thank you for your inquiry.
Obstructive sleep apnea (OSA) is more common in the MS population as compared to the general population. Some people with MS who have OSA do not fit the typical profile of who we think of as having this sleep condition. Typically, when we think of OSA, we think of a middle-aged male who is likely overweight. In MS, this may not be the case. In the MS community, we do see younger people, women and people of normal body weight with OSA. Sleep disorders are importatnt to watch for in the person with MS as they can contribute to fatigue and put the person at risk for other long-term health problems.
Dr. Ben Thrower
I have been diagnosed with chorioretinitis (lesions in my left eye in the choroid behind the retina) i have lesions in my brain my neurologist says probable MS , my Opthamologist tested my blood for herpes syphyllis toxoplasmosis and lupus also lyme disease all came back negative so could the choioretinitis be ms related? I am from a little city and alot of people who have ms here go to dallas for treatment, I am going to be refered to ut southwestern . but untill i go there was just curious because i donot have optic neuritis just choroiretinitis
MS usually affects the optic nerves and not the retina or choriod. Inflammation of the retina and choroid is normally from another cause. It is highly unlikely that the diagnosis of chorioretinitis is directly caused by MS.
Annette Okai, MD
why would a doctor use chemotherapies on somone with ms that is not real bad
There are several drugs used in MS that could be considered chemotherapies. These include oral medications like methotrexate, Imuran and Cellcept. Intravenous medications include mitoxantrone and cyclophosphamide. Depending upon the medication and the dose, some of these drugs may have a lower side effect risk than others. Without knowing the specifics of a person’s case, it's hard to know a certain medication was recommended. Sometimes a drug like methotrexate may be picked if there is a suspicion of other superimposed health issues, like rheumatoid arthritis.
Dr. Ben Thrower
I was recently diagnosed with MS but I have no physical symptoms. I have several cerebral lesions the largest is located parallel to my ventricles. When can I expect to have symptoms? Is it possible for me to never be symptomatic?
"Thank you for the question. Absolutely it is possible to remain symptom free or at the very least that it not interfere with your daily life -- but the important thing is to seek good follow-up with a neurologist and to start disease modifying agents.
Thank you,
Daniel Kantor, MD
Medical Director
Neurologique
President
FloridaSociety of Neurology
----------------------------------------------------------------
Be a leader, help the network ... join neurologique@gmail.com
Multiple Sclerosis Team Approach Rule *** MS Patient Network
www.neurologique.org
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Should a person currently on Betaseron receive the Zostavax vaccine since it is a live vaccine?
Thank you for your inquiry to the MSF.
The answer is No.
Pts with MS should not receive any vaccinations with a live virus component.
Dr. Mitzi Williams, Neurologist
MS Center of Atlanta
What excise can i do to get rid of my pain. Since i was told that i have MS i have alot of pain back, numbness and my legs burn.
Hello! Here's my response:
"Thanks for the inquiry. Neuropathic pain can be a major problem for MS patients. Targeted exercise can help, especially proper stretching. It would be best to see a professional like a Physical Therapist for help in setting up an exercise and stretching program. The burning pain in your legs will likely not respond totally to exercise. Medication is often necessary. Gabapentin and/or baclofen would be good first choices for help with pain and muscle stiffness.
I hope this helps."
Dr. Greg Zarelli, MD
Where do you recommend getting a light weight walker and a "skinny one." My mother has M.S. and I would like to find one of those for her.
Dear Rebecca,
Your mom can apply to the Assistive Technology Grant program, listed on our webiste under the heading "Programs and Activites" , for possible assistance in obtiang a walker. Please feel free to contact our support team at 888-673-6287 if you have any questions regarding this process.
Thank you for your inquiry to the MSF.
Crystal
I was diagnosed with Fibromyalgia, but I am discovering that I have more symptoms of MS than I do FMS. And it seems to be progressing which they say FMS doesn't do. Where should I start in getting checked for MS???
Dear Renee,
The MSF has information listed on our website to tell you more about how an MS diagnosis is determined. You can view this link, http://www.msfocus.org/diagnose-multiple-sclerosis.aspx or look on our website home page under the heading “Learn About MS.” Some people who suspect that they have MS may discuss their concerns with their physician or the may inquire further with a neurologist or MS specialist.
Thank you for contacting the MS Foundation.
Program Services Support Team
Other than Neurontin, what can I take for nerve pain? Would Estrogen therapy help?
Although multiple sclerosis was previously thought of as a “painless” disease, it is now recognized that pain is a common symptom in MS, affecting over 50% of patients at some point in their disease. Unfortunately, pain is a rather generic term that can refer to numerous underlying issues; in addition, people have different “tolerances,” above which stimuli are deemed as painful. Certainly, the factors for the later are an area of intense research. Pain may refer to a local destructive process (i.e. skin breakdown from sacral decubitus ulcer, fracture, or trauma) or may represent a disruption in the mechanism for sensory input, including altered sensory signals (dysthesias) or the sensation that normal stimuli are painful (allodynia). An individual’s experience of pain is likely altered by co-existing conditions and previous experiences with pain (or health care response to pain). Obviously, not all painful sensations in an MS patient are a direct result of multiple sclerosis; therefore, the first step in pain management is to appropriately delineate the nature / etiology of the specific pain (or pains) in question. As with most MS symptoms, treatment of pain in MS is accomplished best by utilizing a team approach including pharmacological and non-pharmacological modalities.
Many people suffer from musculoskeletal pain, often due to abnormal “wear and tear” of muscles or joints. Often, this is described as an aching pain, usually precipitated (or exacerbated) by certain movements, and often responsive to non-steroidal anti-inflammatory medications (like ibuprofen), heat, ice, and rest. Physical therapy is often helpful with this type of pain, providing exercises to strengthen muscle and increase flexibility, to normalize function and improve posture. Therapists also use other modalities, including ultrasound or electric stimulation, to relieve pain. Musculoskeletal pain is quite common in patient with multiple sclerosis and may be due to alterations in function due to acquired neurological deficits. For example, one patient with a foot drop due to leg weakness may develop hip or back pain from “hiking the hip upwards” to clear the foot when walking; others may get pain in the good leg because of “overuse” in an attempt to compensate for the affected limb. Patients with LE weakness from spastic paraparesis may hyperextend their knee (genu recurvatum), which can lead to abnormal wear and tear (and pain in the affected joint); on the other hand, if the weakness is severe, a joint may develop a decreased range of motion or even freeze (develop a contracture) due to decreased movement.
Spasticity is a very common finding in patients with multiple sclerosis. Although often described as “muscle stiffness,” it is defined as “velocity-dependant resistance to muscle stretch”. Although spasticity is sometimes painful (causing muscle stiffness and spasms), it can often be beneficial, allowing patients to compensate for underlying weakness, in that a spastic leg is often stiffly extended, and a spastic arm is often in flexion. Obviously, too much tone can not only be painful, but it can also interfere with function and increase fatigue (due to the excessive muscle contraction). Unfortunately, other types of pain (or infection) can exacerbate spasticity, at times leading to a “vicious cycle” of increased pain and increased spasticity. Treatment of spasticity is also multi-disciplinary, often involving physical therapy (active and passive stretch) and medications like baclofen (Lioresil) and tizanidine (Zanaflex).
- It is thought that this nerve pain is caused by an aberrant signal jumping from one damaged nerve to another (so-called ephaptic transmission), which is likely why this type of pain often responds to seizure medications (anti-convulsants), which probably reduce the aforementioned “short circuits.” Gabapentin (Neurontin) or pregabalin (Lyrica) is often used to treat this type of pain; other epilepsy medications like lamotrigine (Lamictal) or carbamazepine (Tegretol) can also be used. Tricyclic antidepressants like amitriptyline (Elavil) and nortriptyline (Pamelor) can also be effective.
Depression is very common in patients with MS (much more so than in the general population), and often “depression hurts,” especially in patients who have significant other issues with pain. I suspect that there is a vicious cycle with pain and depression with worsening pain leading to worsening depression, and vice versa, and I have had patients experience improvement with both mood and pain with agents like duloxetine (Cymbalta) and venlafaxine (Effexor).
The topic of hormones in MS deserves an article by itself. Given that women are over 3 times more likely to get MS than men suggests that female hormones play a role in MS; it has also been observed that pregnancy is a relatively protective time from an MS point of view, but the disease is often quite active in the post-partum period. These observations have lead to some ongoing clinical trials in MS. Certainly, the Women’s Health Initiative raised significant questions about the safety of hormone replacement, and there is very little data to support hormones for pain relief.
Dr. David Jones, MD
I had a MRI that showed white matter in my brain. I have one area that looks like my small finger and other areas not that big. I have some memory problems and have problems with words and thoughts but not all the time. I have become clumsy and my vision has become awful. I saw a Dr. who said, he could do more test but he doesn't know if I will get anymore white matter or not. This may be it. I would need to decide what to do regarding more testing. Should I let it go and just wait to see if I get worse. It appears this is the one disease that early detection is of no use. Of course, the day I saw him I was doing ok on exam. After I left it took me 5 minutes to get something out of my mouth but he didn't see that.My daughter said, too bad the Dr. didn't hear that.....
Early treatment of MS is generally more effective than waiting until later in the disease. If there is some suspicion that you may have MS, I would suggets going ahead with more testing rather than taking a "wait and see" approach.
Dr. Ben Thrower, MD
I have a major pain whenever I move.
My PT said she's never had an ms patient that had this particular pain.
It's the bone behind my left ear and it's quite painful. I've tried acupuncture, a dentist, steroid injections, cymbalta,and no pain meds ever helps. Sometimes I think its a spasm but other times I'm not sure. It's getting worse. What can I do?
Thanks for any reply. Pam
You may be describing occipital neuralgia. This condition is more common in people with MS, but can be seen in those without MS as well. The greater occipital nerve exits the base of the skull and supplies sensation to the scalp. Pain can travel anywhere along that course of the nerve but may center behind the ear or at the base of the skull. Possible treatments include a local nerve block, carbamazepine (Tegretol) or oxcarbazepine (Trileptal). An older anti-inflammatory drug called indomethacin is sometimes effective as well.
Dr. Ben Thrower, MD
I have over 24 lesions on my brain. What are the chances of me getting a new lesion that will actually cause me to be bedridden? Is it the same as someone with only one lesion or does it go up, because I have so many?
The total number of lesions you have on MRI does not predict the future risk of a severe relapse. There are many variables to consider. If you are on one of the FDA-approved therapies, your risk of an attack is lower. If you have a relapse, there is some chance of a permanent new symptom, but it would be unlikely that a relapse would leave you permanently unable to get out of bed.
Ben Thrower, MD
I've heard of a woman with m.s. becoming pregnant and all symptoms of m.s. disappeared while she was pregnant. Can you explain? Also, is any research being done on things such as this?
Pregnancy is typically associated with a relative quieting of MS, especially in the second and third trimesters. This is an area of significant research with an estrogen called estriol appearing to play a large role. There are ongoing research projects looking at the use of estriol in treating MS. The 6 months after the baby is associated with a slightly higher risk of a relapse. Overall, the effect of pregnancy and delivery on a woman's MS may be slightly protective.
Dr. Ben Thrower, MD
I have been on betaseron for nearly two yrs, I had a recent MRI Brain that shows a new 4 mm lesion in the left thalamic area of my brain, does this mean the meds stopped working? Thanks.
“No medicine is perfect and people continue to have new MRI white spots despite therapy. It sounds like the Betaseron has been working for awhile and the decision of whether to switch is a lot more complicated than whether there is a new lesion or not -- this is why it is so important for you to talk to your neurologist about how you are doing.”
Thank you,
Daniel Kantor, MD
Medical Director
Neurologique
President
FloridaSociety of Neurology
----------------------------------
Be a leader, help the network ... join neurologique@gmail.com
Multiple Sclerosis Team Approach Rule *** MS Patient Network
www.neurologique.org
Twitter, facebook, blogs and more.
I have been on betaseron for nearly two yrs, I had a recent MRI Brain that shows a new 4 mm lesion in the left thalamic area of my brain, does this mean the meds stopped working? Thanks.
“No medicine is perfect and people continue to have new MRI white spots despite therapy. It sounds like the Betaseron has been working for awhile and the decision of whether to switch is a lot more complicated than whether there is a new lesion or not -- this is why it is so important for you to talk to your neurologist about how you are doing.”
Thank you,
Daniel Kantor, MD
Medical Director
Neurologique
President
Florida Society of Neurology
----------------------------------
Be a leader, help the network ... join neurologique@gmail.com
Multiple Sclerosis Team Approach Rule *** MS Patient Network
www.neurologique.org
Twitter, facebook, blogs and more.
I have more questions…
The Multiple Sclerosis Foundation is pleased to answer any question you have about multiple sclerosis. If you have a question that was not addressed, please call our National Toll-free Helpline at 1-888-MSFOCUS (673-6287); or you can contact us by email: support@msfocus.org.
(Last reviewed 7/2009)
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