What services are offered through MSAA’s Helpline?
MSAA provides a toll-free Helpline that allows individuals with MS, family members, care partners, and friends to speak directly with one of MSAA’s experienced specialists. These trained and compassionate individuals have a social services and/or counseling background.
MSAA’s Helpline may be reached in several ways:
- Call (800) 532-7667, extension 154. Helpline hours are Monday through Friday, 8:30 AM to 5:00 PM, EST; with extended Wednesday hours until 8:00 PM EST.
- Email MSquestions@mymsaa.org
- Chat live via your computer through the online MS Chat feature
How can MSAA’s Helpline assist me?
MSAA’s Client Services Specialists are available to assist individuals with MS, and the people close to them, adapt to the changes they may be experiencing as they go through a life-long process of adjustments to best suit their evolving needs. MSAA’s specialists can offer encouragement to clients and their care partners to identify obstacles and discover ways to overcome them. Helpline specialists may also recommend the program(s) offered by MSAA and other resources that would be of help to the client, and assist him or her with the application process.
To follow are questions that MSAA’s Helpline frequently receives:
- Can a blood test be used to diagnose MS?
- Why is an MRI the most frequently used test to confirm an MS diagnosis?
- What other tests or procedures can be used to diagnose MS?
- Am I too old to be diagnosed with MS?
- How do I find an MS specialist in my area?
- How do I discuss my diagnosis with my family and friends?
- What types of MS support and mental health resources are available?
- What diet and exercise wellness plan may benefit me? Can I still do the exercises I currently do?
- What benefit does a cooling vest offer and how does it work?
- Should I disclose my MS diagnosis to my employer?
- Should I stop working?
- Are resources available to help with transportation?
- Are resources available that can assist with home modifications?
- How can I receive help for personal care and home-health assistance?
Can a blood test be used to diagnose MS?
At this time, a blood test cannot be used to determine an MS diagnosis. However, blood tests may be included along with other testing to help rule out “MS mimickers” (other diseases that resemble MS but have other causes). Diagnosing and evaluating MS disease activity is most reliably done by neurologists through a comprehensive neurological history and examination. The main testing tool used to help determine MS is magnetic resonance imaging (MRI).
Why is an MRI the most frequently used test to confirm an MS diagnosis?
When diagnosing MS, neurologists look for lesions (areas of inflammation and myelin damage in the brain and/or spine) that may be viewed on a magnetic resonance imaging (MRI) scan. The MRI uses a computer, radiofrequency stimulator, and a large electromagnet to provide a picture of the brain and/or spine. While the picture looks a bit like an x-ray, please note that unlike an x-ray, an MRI does not expose the patient to any radiation.
For those with multiple sclerosis (MS), the MRI is used to evaluate the size and location of lesions. As noted, lesions are areas of inflammation, and such inflammation can be better evaluated with gadolinium (or contrast) enhancement – a type of dye given to the patient via injection prior to the procedure.
The MRI, particularly with gadolinium enhancement, allows doctors to measure disease activity within the central nervous system (brain, optic nerves, and spinal cord). Test results can help determine the effectiveness of a disease-modifying therapy (DMT), or to get an “inside view” of a patient’s disease status.
Please visit these resources for additional information on MRI technology:
- Diagnosing Multiple Sclerosis and Evaluating Disease Activity
- Revealing the Mysteries behind Magnetic Resonance Imaging
What other tests or procedures can be used to diagnose MS?
Another tool that is sometimes used in the diagnosis of MS is a lumbar puncture (also known as a spinal tap). This is a procedure where a very thin needle is inserted at the base of the spine and a small amount of cerebrospinal fluid (CSF) is collected. CSF is the liquid that surrounds the brain and spinal cord. By collecting a small amount of this fluid, laboratory testing may be performed to evaluate cellular and chemical abnormalities. Since the introduction of the MRI, CSF analysis is used less often, but it may be helpful in supporting an MS diagnosis if the MRI results are inconclusive.
Evoked potential (EP) tests may also be used to help diagnose MS, if further support is needed. These measure the speed of the brain’s response to visual, auditory (sound), or sensory (feeling) stimuli, using electrodes taped to the patient’s head. Delayed responses can indicate possible damage to the nerve pathways.
Am I too old to be diagnosed with MS?
While there is no “typical” age of diagnosis, many people are diagnosed between the ages of 20 and 40. It’s been noted that the onset of symptoms have been experienced by individuals mostly between the ages of 15 and 50. While all of this is “typical” of an MS diagnosis, there have been individuals who are diagnosed or begin to exhibit symptoms later in life.
Unfortunately, there is no such thing as being “too old” to receive a diagnosis of MS. Individuals who are diagnosed later in life may be presented with certain challenges in terms of medication availability (some medications are not approved for certain age groups) or access to information in regards to their age population. Far more work needs to be done in terms of presenting information and resources for those who are diagnosed with MS much later in life. More information can be found here.
How do I find an MS specialist in my area?
When you’re ready to start looking for a neurologist who specializes in multiple sclerosis, begin by asking your primary care physician for referrals and check with your health insurance provider. You can also contact MSAA for referrals to MS treatment centers located in your area. Talking to others living with MS for recommendations in finding specialists might help as well.
How do I discuss my diagnosis with my family and friends?
Disclosing something such as a diagnosis is a very personal and individual decision. When and how you discuss your diagnosis with those closest to you is ultimately your decision. Having a support system that you can reach out to and depend on is an important part of coping with a diagnosis and also building a network.
When you are ready to discuss with your family and/or friends, be honest with them about where you are – both physically and mentally – with your diagnosis. Give yourself time to explain in your own words and equally give them enough time to absorb and digest the information you are presenting to them.
Share as much as you are comfortable with in terms of symptoms and medications. Don’t try to say everything in one sitting; allow both you and those who you are telling some grace in not knowing how or what to say. The important thing is that you find those individuals with whom you can confide in and start the conversation.
Additional resources include:
- Helping Your Family and Friends Understand Multiple Sclerosis
- Making the Most of Our Relationships
- Finding Direction When Newly Diagnosed
What types of MS support and mental health resources are available?
At times, MS can be a challenging disease to cope with and manage. It’s important for individuals to know that they do not have to go through the journey alone. Several MS organizations provide diverse programs and services to help with issues that can accompany MS.
There are also many approaches to connect with others living with MS to share experiences, ask questions, and to find support. In-person groups, online chat forums, and telephone helplines are some of the ways to communicate with others, and these are sought out differently based on one’s preference and comfort level. Individuals can also seek counseling and therapy services with the help of referrals from their doctor and insurance provider, if applicable, or through county mental health clinics and programs for those without insurance. Mental health crisis services can also be found when searching resources by county, as well as suicide and domestic violence services.
What diet and exercise wellness plan may benefit me? Can I still do the exercises I currently do?
Wellness strategies have become very important components of MS disease management throughout recent years. Diet and exercise are even incorporated into one’s treatment plan by their doctor, when appropriate. While there is not one specific diet recommended for MS, a doctor or nutritionist may suggest different dietary regimens as part of their MS management.
Exercise is also beneficial, under advisement from one’s doctor, and can be done in a variety of ways, including aquatics and yoga. Keep track of how you feel before, during, and after your exercise routine if currently involved in one. Using mobile phone applications like My MS Manager and journaling tools can help with this. Being mindful of any limitations you notice or if MS symptom issues occur will be important to know for your care moving forward. Try not to get discouraged if a current routine needs tweaking – wellness plans can be modified to fit a person’s specific needs and objectives.
What benefit does a cooling vest offer and how does it work?
Many people with multiple sclerosis are heat-sensitive. MS research has proven that heat and humidity often aggravate common MS symptoms. MS research has also proven that cooling the body can help lessen the negative effects of heat and humidity on a person with MS.
MSAA’s Cooling Equipment Program offers cooling vests and accessories for adults with multiple sclerosis as well as children diagnosed with pediatric MS. Cooling vests are commonly worn over clothing and contain insulated pockets that hold small ice packs. MSAA also offers smaller products to wear under clothing as well as accessories to help cool the neck, wrists and ankles. MSAA provides these products at no charge and items are shipped directly to the client.
Should I disclose my MS diagnosis to my employer?
How and when you disclose your MS to your employer is up to you. There can be apprehension and concern when disclosing a diagnosis to an employer. Disclosing your diagnosis to your employer can open up the conversation for work place accommodations and any potential leave of absences you may need to take.
It’s also important to be honest with yourself. Is your current MS situation going to greatly impact your ability to perform your job tasks? If yes, you would want to consider having a conversation with your human resources (HR) team or direct supervisor. Before discussing your diagnosis with your employer, you can consult with the Department of Vocational Rehabilitation (or DVR) in your area and get some insight or input from their office on language to use or ways that you can bring up the topic of your diagnosis.
Please see these additional resources for more information:
- Employment and MS: The Challenges and Opportunities
- Employment Concerns with Multiple Sclerosis – Things to Consider
Should I stop working?
While many people find that leaving their current job is the right move for them, this is a decision that should be explored in detail for each person. Some questions to ask yourself when working through this decision include:
- Are there some changes or accommodations that can be made for me to continue at work?
- Have I contacted local disability services and vocational rehabilitation offices to learn about any programs or services that are available to me?
- What does my financial situation look like?
- If applying for disability, how long might that take?
- Am I eligible for healthcare coverage that will cover my MS needs?
When deciding whether or not to leave the workforce, either in part or totally, gathering all the information you can and doing some future planning is a crucial step. Additionally, take into consideration the impact this might have socially. Are many of your friends coworkers? Does work have an influence on the services and transportation you receive/access in your area? What other volunteer activities or hobbies would fill some of your free time? Keeping a schedule and staying engaged with your community are all great ways to keep in contact with others as well as keep yourself occupied and active.
Are resources available to help with transportation?
Individuals can sometimes qualify for transportation assistance through their health insurance for help traveling to medical appointments. There are also paratransit services available throughout parts of the country for people with disabilities who are unable to use conventional fixed-route bus/rail services. This transportation can include door-to-door or curb-side services and usually requires that program eligibility requirements be met, and advanced reservation notice given. Researching paratransit services in the county and asking one’s Agency on Aging and Disability services or local Center for Independent Living office for resources can also help in this search.
Are resources available that can assist with home modifications?
Home modifications include items such as ramps, walk-in showers, and widened doorways. They are necessary at times to create safer and more accessible living environments for individuals living with disabilities. Professionals such as occupational and physical therapists can help to determine what needs to be modified within a home to create this space. Certified Aging-in-Place Specialists (CAPS) are home builders and remodelers experienced in making modifications.
Different types of grant and loan programs are available to help with the cost of home modifications. Individuals can contact their county Housing/Community Development office, local Center for Independent Living, housing rehabilitation programs, and county Agency on Aging and Disability Services for further details.
Please see these additional resources for more information:
- Home and Lifestyle Modifications for Safety and Accessibility
- Making Your Home Work For You – Improving Home Safety and Accessibility
How can I receive help for personal care and home-health assistance?
There are times when insurance companies will cover limited or temporary home-health visits for individuals, but many do not cover long-term costs of in-home care needs. For this help, individuals can contact their county Agency on Aging and Disability Services and also their local Center for Independent Living office for information and referrals for homecare assistance. You can find the contact information for these agencies using the name and your county location in most internet search engines. There are county and/or state programs to assist with in-home care. Sometimes called Waiver programs, individuals can qualify for home-health assistance depending on availability and funding.