Frequently Asked Questions About Multiple Sclerosis

What is multiple sclerosis?

Multiple sclerosis is a progressive and unpredictable disease of the central nervous system that disrupts communication between the brain and other parts of the body. The severity of the disease and its symptoms can vary greatly from person to person.

Some may have a very severe course, others a relatively benign course. But the main issue is that development of disability at some level is common, and it tends to begin in young adulthood. Present treatments are based on the principle that MS is an autoimmune disease, and thus disease modifying therapies (DMTs) will alter, modulate or suppress parts of the immune system.

For more detailed information, please visit MS: The Basics, or explore this site further.

What causes multiple sclerosis?

Most people who have multiple sclerosis (MS) spend at least some time wondering if they did something to cause the disease. They may also wonder whether their children or other family members have an increased risk of developing MS and whether there is anything to be done about that. Relatives of people with MS also wonder about their risk and whether there is anything that they can do to avoid MS.

The exact cause of MS is unknown, but likely involves an interplay between one or more genes (more than 200 genes altering risk have been discovered), and a number of environmental factors including, at least: exposure to the Epstein-Barr virus (EBV), smoking, low vitamin D, obesity, toxic exposures, and others.

Technically, multiple sclerosis is known as a multi-factorial disease. This means that MS is caused by a combination of genetic and environmental factors.

What are the symptoms of multiple sclerosis?

One of the most challenging aspects of diagnosing, treating and living with MS is the fact that so many different symptoms can manifest in so many different ways. No two people’s experience are the same,  with both symptoms and severity of those symptoms varying widely from one person to the next.

Some of the most common symptoms often experienced with MS include:

  • Numbness and tingling
  • Fatigue
  • Muscle stiffness (spasticity)
  • Weakness
  • Tremor
  • Difficulty walking (ataxia)
  • Pain
  • Vision problems
  • Dizziness and vertigo
  • Problems with coordination and balance
  • Bladder and/or bowel problems
  • Cognitive problems
  • Mood problems
  • Sexual problems

For more information on the complexity of MS symptoms, please visit our Symptoms information section.

Is there a cure for MS?

There is, as yet, no known cure for MS, but there are many treatments available, both for MS itself and for the many symptoms than manifest as part of someone’s MS experience.

Treatment is multifactorial, including:

  • treatment of acute attacks with steroids;
  • treatment of ongoing symptoms;
  • treatment of other conditions (co-morbidities) that may worsen someone’s function with MS (for example, treating diabetes, high blood pressure, orthopedic problems);
  • and use of disease modifying therapies (DMTs), drugs that can reduce acute new symptoms (relapses), new MRI lesions, and slow progression of disability.

Research continues at the Rocky Mountain MS Center and elsewhere to explore ways to reverse the effects of the disease, detect it as early as possible, and hopefully one day to prevent or cure it entirely.

How is MS diagnosed?

There is no single test that is completely conclusive, but there are several tests and procedures that can be used to establish a diagnosis of MS.

The basic principle of MS diagnosis is to identify damage to the central nervous system (CNS) — brain, spine and optic nerve — that demonstrates “lesions separated in space (within the CNS) and over time” (typically two or more relapses, or slow progression over a year). Diagnosis must also assure that other potential causes of MS-like symptoms are ruled out.

The formal diagnostic criteria have changed over time, but these principles have not.

Generally this means physicians will go through a thorough medical history followed by a examination of the patient’s nervous system, and MRI scans of the brain, spine and possibly the eyes. Often, but not always, a spinal fluid exam is performed (lumbar puncture), looking for signs that the immune system is active in the CNS. If done, neurologists are looking for evidence of proteins, antibodies, are present in elevated amounts in the spinal fluid compared to the blood.

A specific eye test optical coherence tomography, may also be done, looking for damage to the optic nerves. Other blood or radiologic tests may also be done to rule out diseases that may mimic MS.

Are there different types of MS?

In the past, MS was commonly divided into four separate forms or “types” of the disease. Today we think of MS as one distinct disease, with different symptoms from person to person, but also changing manifestations over the course of the lifetime of a single patient. There is still debate as to how distinct or different these forms of MS are from each other, but it’s nonetheless useful to look at these four categories as a way to explain how MS manifests at different stages in different people.

Clinically Isolated Syndrome and Radiologically Isolated Syndrom (CIS and RIS) both describe the very earliest detectable signs of MS. CIS is when the first outward, clinical signs of the disease, or the first relapse. We say “isolated,” because by definition CIS is observed without ongoing symptoms or continued relapses. Commonly this is between the ages of 20 to 45, but may be younger or older. Typical symptoms might be numbness, or visual disturbance such as optic neuritis. An individual after this first attack may already fulfill formal criteria for a diagnosis of MS based on the symptoms and lab tests, but if not, we simply call it a CIS. RIS is when MS lesions are observed on an MRI scan, but no outward symptoms or signs of relapse are present.

Over time, if a patient has more clinical symptoms, and/or new changes on MRI scans, they would then fulfill formal diagnostic criteria for MS. If a person never experiences another exacerbation, or their MS does not progress or get worse over time, this singular event is said to be CIS. Most patients however will eventually experience another exacerbation, in which case they fulfill criteria for a formal diagnosis of MS.

Relapsing-Remitting MS (RRMS) is diagnosed in someone when they have a second attack and/or new changes on MRIs over time. Typically, these would affect different parts of the CNS, and then an individual would formally fulfill criteria for MS. Up to 85% of people diagnosed with MS have relapses when diagnosed. For most with RRMS, relapses and new MRI changes are most common when they are younger, and risk of new relapses diminishes with age.

Secondary Progressive MS (SPMS) manifests about 10-15 years, on average, after a diagnosis of RRMS. Some (but not all) will begin to more overtly show signs of slowly worsening symptoms unrelated to, or in addition to, relapses. This may be manifested especially with greater walking and cognitive problems, and is called SPMS. Men, and especially those with very active relapses when first diagnosed, are at higher risk of developing SPMS. We now recognize that CIS, RRMS, and SPMS are all “relapsing” forms of MS. This is relevant to treatment, as younger patients with active disease with recent relapses or new scan changes are more likely to benefit from present MS meds, regardless of whether this is called RRMS or SPMS.

Primary Progressive MS (PPMS) is diagnosed when someone has a steady progression of MS symptoms that is not preceded by relapses. Average age of onset is similar to those with SPMS, about 40-45. Followed long enough, a minority of those with PPMS could have a relapse.

How do I decide which therapy is best for me?

It is important to learn about your treatment options and discuss them with your healthcare provider.  It’s also important to consider timeliness, as studies have shown the earlier a patient begins treatment the less disability they will have from multiple sclerosis over the long run.  You will also want to consider side effects, your current lifestyle and how the therapy is administered.

Generally, MS is treated with what we call Disease Modifying Therapies (DMTs) — drugs that have a direct effect on the disease process. Visit our DMT information page to learn more about these drugs and treatment options.

How do I find an MS provider?

If you are located in Colorado or near enough for convenient visits to our neurology team on the Anschutz Medical Campus in Aurora, we encourage you to contact the Rocky Mountain MS Center at University of Colorado by calling 720-848-2080. We also offer telehealth visits for Colorado and some neighboring states, for those who can’t easily get to our offices.

Other services available at UCHealth include:

  • MRIs and infusions,
  • physical, occupational and speech therapists,
  • neuro-ophthalmology,
  • neuro-urology,
  • physical medicine and rehabilitation,
  • neurosurgery,
  • neuro-otology,
  • and many others.

For additional options, you can call 1-800-FIGHT MS, which will connect you to your local chapter of the National MS Society.

How do I make an appointment to see a neurologist at the Rocky Mountain MS Center?

The Rocky Mountain MS Center is directly affiliated with the Rocky Mountain MS Center at University of Colorado, and our main clinic is located on the Anschutz Medical Campus in Aurora, Colorado. Please call 720-848-2080 for appointments and more information.

Our physicians also see some patients regularly at the following Denver-area locations. If you’re eligible for care at any of the following institutions, you can call the numbers below for more information:

  • Denver Health: Department of Neurology — 303-436-4949
  • Children’s Hospital Colorado: 303-399-8020
  • Denver VA Medical Center: 720-777-2212

It’s always important to be sure to get all your records from prior doctors and hospitals, and to obtain all prior MRI scans from the place where they were done (your neurologist may say they sent all records, but they typically do not perform the actual MRI scans… you may need to obtain them yourself from the location where they were done, and bring the disc to the neurologist’s office with you).

Leave ample time to get to the location, park, and make it inside at least 15 minutes prior to the appointment time.

How do I pay for MS treatment?

The DMTs used for MS treatment are very expensive, and most of the pharmaceutical companies have programs to assist with co-pays and deductibles. (Note: Government-based insurance often limits access to the assistance programs, so those on MedicAid and MediCare may not be eligible)

If you are considering going on an MS therapy, contact the pharmaceutical company that manufactures it to learn about their assistance programs.

Also, please note that many insurers employ “step edit” approaches to payment for DMTs, meaning you may need to “fail” one or more less expensive DMTs before they will pay for the one originally prescribed by your doctor.

Every insurance program, however, is different, and the only way to know for sure if insurance will pay for the drug is to order it and get approval or denial. If denied, the Rocky Mountain MS Center at University of Colorado administrative team will help file appeals and will push as hard as possible to get the drug you and your provider feel is best for your care.

Does the Rocky Mountain MS Center accept insurance?

The Rocky Mountain MS Center at University of Colorado is part of the UCHealth system. All insurance providers accepted by UCHealth are accepted by the neurology team at the MS Center. Patients should note that with every annual cycle of their insurance plan, usually resetting on January 1, coverage of physicians, hospitals, therapists and medications may change. Thus, it is very important each year to review what is covered and what is not in your specific insurance plan.

The King Adult Day Enrichment Program (KADEP) also accepts some insurance, including Medicaid. Please contact KADEP at 303-433-6887 for more information.

What role does the Rocky Mountain MS Center play for those living with multiple sclerosis and their families?

The Rocky Mountain MS Center provides programs and services for people living with MS, family members, support partners, caregivers and healthcare professionals.

We assist individuals and their families by providing information, referral, education, support and individualized care including an adult day program. We are recognized internationally for our research which includes multiple clinical trials, operating one of the largest MS-specific tissue banks in North America, and housing an MS biorepository.

For more information on programs and services for people affected by MS please explore www.mscenter.org or contact us at 1-866-557-7030 or info@mscenter.org.

How can I participate in clinical trials?

The Rocky Mountain MS Center at University of Colorado is the home of one of the largest MS research programs in the world. The success of our clinical research programs depends on the broad support of the MS community in the Rocky Mountain MS Center region. Together we are stronger than MS.

For a complete list of active trials and studies, please visit the University of Colorado School of Medicine’s Department of Neurology recruiting information page.

If you think you may qualify for one of these studies, please contact Neurology Research at (303) 724-4644 or NeuroResearch@CUAnschutz.edu.

I am a former MS Center patient, how do I get a copy of my medical records?

If you are a current or former patient of the Rocky Mountain MS Center at University of Colorado, please call 720-848-1031 to request copies of your medical history.

Also, you may access many of your medical notes, labs and reports if you sign up for MyHealthConnection. This also allows you easy electronic access to the team at UCHealth, including scheduling yourself for visits.

How can I be added to or removed from the MS Center mailing list?

If you would like to receive our electronic newsletters, our quarterly magazine (InforMS Magazine), seminar invitations, clinical trial opportunities, and fundraising events, please subscribe here.

If you are currently receiving information from the Rocky Mountain MS Center, but would like to be removed from our mailing list, please email info@mscenter.org with your full name, address and email address.