Frequently Asked Questions | Multiple Sclerosis Care Center

Exacerbation vs Pseudo-exacerbation

My symptoms are new or worse; is this exacerbation?

It can be difficult to know when new neurologic symptoms represent a MS exacerbation or flare or when they represent a false (pseudo-exacerbation).

A true exacerbation results from a new MS lesion in the brain or spinal cord. MS exacerbations or flares typically develop over hours to days rather than seconds. The new symptoms usually last for at least 24 hours. The area where the new lesion is located in the nervous system will determine the type of symptoms the lesion causes.

A pseudo-exacerbation is a worsening of symptoms in the setting of an external complicating factor that is not related to an actual new lesion from your MS.

Some potential causes of a pseudo-exacerbation include: Infections (viral or bacterial), elevated core body temperature (related to exercise activity or the environment), new medications, physical overuse or over-activity, and stress. Usually we can help to determine whether a new problem represents a new exacerbation or pseudo-exacerbation.

Common True Exacerbation Symptoms

NEW Loss or blurred vision in 1 eye
NEW Double or jumpy vision
NEW Numbness or tingling (in one limb, both legs or half the body)
NEW Weakness (in one limb, both legs or half the body)
NEW Balance difficulties
NEW Tremors in one arm
NEW Abdominal or chest tightness (“the MS hug”)

More Common Pseudo-exacerbation Symptoms

Generalized weakness
Cognition or memory change
Fatigue
Bladder changes (frequency, urgency, slow flow, double voiding, or hesitancy)
Bowel changes (constipation, diarrhea)

If any of these symptoms occur, please take your temperature and then notify us. Evaluation of both exacerbations and pseudo-exacerbation is important. While high dose steroids may speed recovery from true exacerbations, they are not usually used to treat pseudo-exacerbations. Removing the cause of the pseudo-exacerbation will usually result in the resolution of your symptoms within time.

I need a scooter or wheelchair. How do I obtain equipment?

Insurance allows any one type of equipment: scooter or any type of wheelchair (transport, electric) once every 5 years. Our center provides our patients with a referral to a renown UPMC program known as The Center for Assistive Technology commonly referred to as CAT. The team of physicians, therapists and administrative employees will support you and your mobility needs. This team will make sure you are properly assessed and fitted for the equipment you need. When our providers see you in our center, they complete a neuro exam only which is not sufficient for the insurance requirements of devices such as a scooter or wheelchair. Our MS Center has been using CAT for over 20 years and they provide excellent services. They assist with all the insurance coverage needs. The CAT team will work with the company that will provide the equipment to you once approved by insurance. This is why we do not provide orders for this type of equipment but rather refer our patients to CAT.

We can place a referral / order for you to attend CAT in your chart if you make this request. You may schedule that appointment by calling 412-647-1310. Here is a link to further online information regarding CAT. The Center for Assistive Technology (upmc.com)

Should you have additional expenses that your insurance does not cover related to your equipment -you may contact the National MS Society at www.nmss.org or call them at 800-344-4867 to request financial assistance.

Should you choose not to use CAT please use your Primary Care Physician to assess you and order your wheelchair. We understand that CAT may not be convenient for everyone.

We know you will have a great experience using CAT based on our patients’ previous experiences over more than 20 years.

I need an insurance authorization for my medication.

Most of the medications used to treat the multiple sclerosis and other autoimmune conditions require prior authorization. We have authorization specialists on site who work with you and your insurance carrier to obtain authorization prior to initiation of treatment. Prior to treatment you will be advised of any known out of pocket costs or directed by our staff to a website or phone number to calculate this cost. We also provide you with many resources for assistance and financial programs to make these medications more affordable. Some of the medications that our office authorizes includes: Ampyra, Nuvigil , Provigil, Adderall, Avonex, Betaseron, Copaxone, , Gilenya, Lemtrada, Aubagio, Kesimpta, Plegridy, Tysabri, Rebif, Rituxan, Ocrevus, PLEX and IVIG, however this list is not all encompassing. The authorization process is insurance carrier dependent and may take 1-6 weeks for processing.

If your insurance denies the medication, we may be able to process an appeal or we may need to provide a medication substitution. Each situation varies and your provider, as well as the authorization specialists will assist you in any way we can.

I need a medication refill sent to my pharmacy.

ALL refill requests should be made 72 hours or more in advance to allow processing. The preferred method of refill is electronic through the MyUPMC system or have your pharmacy send an electronic request for refills. This is a fast and efficient way to get your medication refill in a timely manner. You may also call 412-641-6600 (option 6) to leave a message for a refill. Please provide the following information:

Name (with spelling)

Date of Birth

Refill medication (name, current dose, quantity requested)

Your return phone number

Preferred pharmacy and pharmacy phone number

I need an insurance authorization for my MRI.

Many insurance companies have an approval process when tests such as MRIs, MRAs and CT scans are prescribed by your health care provider. It is important for you know if your insurance company must first approve the test so that the cost will be covered by your insurance company. You may still have a co-payment for the MRI even if your insurance company does approve the test.

If your scan is to be completed in 6-12 months prior to your next scheduled appointment, please let us know at least 30 days in advance of your test so that we can obtain the necessary authorization. Each insurance company may authorize the test for a different length of time.

If you have not received your authorization number from our office, please contact us via phone 412-641-6600, option 8, or through MyUPMC to request or check on the authorization prior to completing your test. If you complete the exam without authorization, you may be responsible for the cost of the exam.

How do I sign up for MyUPMC?

We have found it helpful to communicate with our patients using MyUPMC, a very useful tool and a new and easy way to connect to your healthcare. You can sign up during your next office visit, or you can sign up directly online. View the MyUPMC website, where you can set up your new online account. For assistance, please contact the MyUPMC Support Line via email or call 1-866-884-8579, option 2. More information about MyUPMC and how to communicate with our office can be found here.

How do I find my test results?

If you have a MyUPMC account, your results will be listed under the test results tab. If you do not have a MyUPMC account, we encourage you to sign up for this service.

You can call the office at 412-641-6600 for results if you do not have an account as above.

How do I have a form completed by your office?

In order for our office staff to complete any medical or insurance form or letter request, we need to inform you of our office procedures for handling such paperwork. Our Neurology Department requires that you complete an Authorization for Release of Protected Health Information form (below) so that we can legally share information regarding your medical condition with the person/ company requesting such information.

Please be aware that it can take up to 2 weeks for the forms to be completed due to the number of form requests our office receives on a daily basis. Once the forms are completed, we mail and/of fax the form or letter to the requesting individual or company unless you state otherwise. If you need a copy of the form, please advise our office. Otherwise this gets scanned into your electronic medical record.

Utility Shut off notice

Please let us know via phone call or MY UPMC that you are having a Utility Shut off Notice form faxed to us. Form should be faxed to 412-692-2191. If your utility provider does not use a form and requires that a physician call to delay turning off service, please use MY UPMC or call us with the following information: Name, address, name, name the bill is under and account number. We will attempt to call the utility provider within 72 hours of receiving this information.

Jury Duty:

Please mail or fax your form to us at 412-692-2191. We will attempt to complete and return within 72 hours.

Handicapped Placards:

We have forms from the Pennsylvania Department of Transportation that we can complete for you. If you reside outside of the state of PA, please mail the form to us and we will be happy to complete the form should your condition limit your ability to walk. You may request this during an appointment, or in between visits.

Release of Records

UPMC is committed to protecting the privacy of your medical information. To safeguard your privacy, you must complete and sign a form before records can be sent. We use an outside vendor who handles our releases. Should you want to request records, our form is available below for you to download. Once we receive an accurately completed Release of Record form we forward it to Healthport. On the form, you must indicate what records are to be released and where they are to be sent. To check the status of your record release you may call 412-648-6057. You may return the release form by mail or fax at 412-692-4907. We are only able to release our records to you (example your progress notes and tests ordered by our physicians on staff in our own department.) We cannot release records we received about you from another provider. Please note there may be a cost involved for you to receive records.

If you are requesting records related to a hospitalization at a UPMC hospital, you will need to request this by phone 412-802-0100 or fax: 412-683-1492.

Please see PDF Release

Why do I need a primary care physician (PCP)?

Neurological care is focused on limiting the progression of multiple sclerosis. As there are many symptoms that can occur with MS, our practice can provide guidance and specialty care related to some of these symptoms you may experience or we can refer you to providers who are skilled in managing those symptoms that have occurred as a result of MS.

Unfair as it seems, MS does not keep other disorders away. Like the general population, you are subject to medical problems, which means that regular visits with a primary care physician and age-appropriate screening tests are just as important for you and your MS condition as they are for everyone else. Most patients with chronic illnesses do not have a single, predominant condition. The five most prevalent disorders occurring alongside MS are depression, anxiety, high blood pressure, high cholesterol, and chronic lung disease. We require that each patient in our practice have a primary care physician who should be seen on a yearly basis. As total health providers, primary care physicians handle annual physicals, perform routine screenings, give vaccinations, manage chronic issues such as high blood pressure, and offer guidance on diet and exercise programs. They take a comprehensive look at your health and work with you to mitigate issues as you age. Cardiovascular risk factors such as hypertension, heart disease, obesity, and type 1 diabetes are associated with a greater chance of developing new MS lesions.

Routine visits with your primary care provider not only promote your overall health, but they also build your health history. Knowledge of your health history, as well as your family health history, is imperative for prevention of diseases and also helps your doctor catch early symptoms of serious conditions. Moreover, it is essential should an emergency arise. Primary care providers can more easily detect patterns in your health and recommend lifestyle changes to prevent future complications that may require expensive specialty care. This can also help to limit progression of MS. We can communicate information about you after your visits in our clinic so they are able to make decisions about your care with current knowledge of your neurologic condition.

Should I get a vaccine/immunization?

Please see section on Vaccines under the disease management tab.

My copays are high; is there any financial assistance for me?

There is a list of financial assistance programs on our Resources page.

I am changing my insurance; who needs to know this?

Please call 412-641-6600, option #5, to notify us about any changes to your insurance plan. It is important that your insurance information is current in our system.

I heard about Gadolinium based contrast; is this harmful?

An emerging concern with MRI contrast is that the body may not fully eliminate the gadolinium and that some of it may remain in the body. Recent studies have revealed that the gadolinium contrast may remain in the body, particularly the brain or bones. Until recently, the medical community was unaware that gadolinium contrast was not completely excreted by people with healthy kidneys and that at least in some patients gadolinium remained in the body. No study has shown this gadolinium to be harmful, however as we did not know this process occurred, adequate studies of long-term safety have not been completed. We believe that given the likelihood of numerous MRI scans for people with MS over a lifetime that this is an important issue. We are aware that the National MS Society is formulating an information and action plan. To learn more, please continue reading here.

What is the JC virus?

The John Cunningham virus (JC virus) is very common; between 70 and 90 percent of all people have this virus. While many people carrying it will not experiences any complications, for a small number of people with MS, the virus can cause problems. Once an individual's immune system is already impaired as a result of an illness or immunosuppressive medication, the virus becomes activated. Because those with MS already have a weakened immune system, they are further at risk. When the virus reaches the brain, it attacks the brain's white matter as well as the cells that create myelin, a coating that covers and shields nerve cells. This infection is referred to as progressive multifocal leukoencephalopathy (PML), and it can be highly debilitating and possibly fatal. Individuals with MS who are taking Tysabri are especially at risk. Your risk of this infection is also higher if you have previously received other immunosuppressive medicines such as chemotherapeutic drugs like cyclophosphamide (Cytoxan), methotrexate, Imuran (azathioprine), mycophenolate mofetil (CellCept), Fingolimod (Gilenya), teriflunomide (Aubagio), or others. Moreover, the risk of this infection is considered higher in patients who have received a medicine for more than a year and a half.

While testing positive for the JC virus does not guarantee a person will have PML, it is the only way one can contract this infection. Thus, if you are receiving drug modifying therapy, it is important to get tested for the virus regularly; even a negative result cannot grant much reassurance. A person with MS can become infected at any time during his or her treatment.

I am struggling at work to keep up with my work responsibilities. What can I do to help myself?

It can be very hard to work with your neurologic symptoms caused by your immune disorder. Work provides us with positive relationships, meaning, and accomplishments. It also supplies us with income and health benefits. Without a job, you may not be eligible for health benefits and income, thus you will not be able to pay for your living arrangements or health condition with the care and treatment you need. Therefore, you may need to continue working.

Each state has an Office of Vocational Rehabilitation. Here is link for State of PA.

Vocational Rehabilitation Home (pa.gov)

The office can provide supports to keep you employed and work objectively with you and your employer for accommodation suggestions. This office goals are to help persons with disabilities prepare for, obtain, or maintain employment. OVR provides services to eligible individuals with disabilities, both directly and through a network of approved vendors. Services are provided on an individualized basis. The OVR counselor, during face-to-face interviews, assists customers in selecting their choice of vocational goals, services, and service providers. We suggest you contact them so that you can continue your employment or look toward another work role that will allow you to continue to be employed.

Even if you are not employed at this time and wish to be employed but don’t know where to begin, this department can also assist you.

You are welcome to contact us to be seen so we can discuss workplace accommodations. If you find there is a way your employer can work with you to improve your ability to manage your tasks, we may need to complete the employer’s form requesting this or to write a letter. If there is something that you see that may assist you, we are happy to work with you completing the required paperwork.

What is the Family Medical Leave Act?

Family Medical Leave Act (FMLA) was passed by Congress and designed to help employees balance their work and family responsibilities by allowing them to take reasonable unpaid leave for certain family and medical reasons. Employees are eligible for leave if they have worked for their employer at least 12 months, at least 1,250 hours over the past 12 months, and work at a location where the company employs 50 or more employees within 75 miles.

These employers must provide an eligible employee with up to 12 weeks of unpaid leave each year for any of the following reasons:

For the birth and care of the newborn child of an employee;
For placement with the employee of a child for adoption or foster care;
To care for an immediate family member (i.e., spouse, child, or parent) with a serious health condition; or
To take medical leave when the employee is unable to work because of a serious health condition.

FMLA is job-protected, unpaid leave. Employees may use employer provided paid leave while they take FMLA leave if the reason they are using FMLA leave is covered by the employer’s paid leave policy. An employer may also require an employee to use their paid leave during FMLA leave.

We are happy to complete FMLA forms for patients who have a neurologic diagnosis for which we are seeing you and treating you at least twice yearly.

Three Tyes of FMLA Leave

Intermittent Leave -You may need intermittent leave for your medical condition as there are days you may not feel well. Our protocol is to provide for 2 days off work per month if you find you are needing time off for your condition. If you are struggling and needing more time off, we need to see you to discuss your symptoms and what limits your ability to work.
Long term leave -If you are presently experiencing an exacerbation and require a continuous leave of several weeks or months or are highly disabled and struggling and require a long-term leave, we can provide that for you. We will need to see and examine you as your employer will want details of your work limitations. This may also require you to be on Short Term Disability (please see our information on STD later in this section).
Conditions Requiring Multiple Treatments -If you are receiving infusions here at least twice yearly we can complete the forms for you to allow the appointment times from off work that you will need.

I may need to go on Short Term Disability or Long Term Disability as I am struggling to work

If you are working to live and living to work and you feel you have no quality of life, we do want to discuss this situation with you and set up a plan for you to improve your quality of life in some way. Though you may have to work, we may be able to assist you with some supports. Please discuss with us on your next visit or schedule a visit with one of our Nurse Practitioner or Physician Assistants to review your situation.

Our Centers' Processes for Short Term Disability, Long Term Disability and Accommodation Forms

Short Term Disability (STD) and Forms

Many employers offer 6 months of STD. This can be used for periods of exacerbation where you cannot manage your work role. You may not receive 100 percent of your wages in that time frame. Some patients may also purchase STD privately when self-employed or purchase this in addition to an employer’s plan. (example AFLAC for UPMC employees).

If we are caring and treating your medical condition and you are on short term disability for that reason, we request that you are seen every 2 months to document your condition. Failure to provide adequate documentation of your condition to the disability companies can jeopardize your insurance payments. Please make sure you schedule and keep your own follow up appointment for this. It is also your responsibility to make sure we receive forms to complete.

Should you transition from short to long term disability insurance we may ask to see you for a longer visit (60 minutes) to document your condition and why you cannot work. Sometimes you will be asked to complete other testing for your condition as we can’t provide all data that insurance requires. Additional testing may include neuropsychological testing and or functional capacity exams. Once on long term disability, an employee is typically discharged by the employer and you lose access to benefits of the through their online portal. You may also loose your health insurance at this time as you are no longer considered an employee.

Options for health insurance include:

Joining a spouse's plan.
Sign up for Medicaid or COBRA or using a special enrollment period under the ACA.
Purchase a short-term health insurance plan (provided your state allows them).
Please Check with your ex-employer about its plans for health insurance coverage or for the documents you may need to get covered under the Affordable Care Act (ACA).

Long Term Disability (LTD) and Forms

Once you are approved for LTD, a form will need to be completed yearly. As you may show some improvement in the years following your employment as you are not working full or part time we need to document your improvements are related to your ability and time you now have to manage your health. Please let us know that you are on long term disability so we can note that in your clinical note. Our focus is not on your previous employment but on your disease and symptoms. We ask that you let us know if you are on long term disability so it can be noted in your visits.

If you are working to live and living to work and you feel you haver no quality of life, we do want to discuss this situation with you and set up a plan for you to improve your quality of life in some way. Though you may have to work, we may be able to assist you with some supports. Please discuss with us on your next visit or schedule a visit with one of our Nurse Practitioner or Physician Assistants to review your situation.

Accommodation Forms

Some patients request steady work shifts, no overtime or inability to work more than X days per week without a 1 or 2 day break. Other frequently asked accommodations are parking closer to door, a desk that is closer to the rest room. We can work with you on these and other accommodations requests. Please schedule a visit to discuss these.

We can work with you to make these requests though employers can deny them if they don’t have adequate coverage for a work role if you are provided the accommodation. Its best if you work closely with your employer.

When pt run out of FMLA time, companies may send an accommodation form for completion. You can place the same information that is requested for FMLA. It typically is not written in the same manner as FMLA form questions but include that info.

*** Please note we do not provide accommodation letters or forms for work from home for infection prevention reasons if you are on any of our medications that lower your immune system. We ask that you request this form your Primary Care Physician. Should you contact any infection and need treatment or time off this is managed by your PCP.

How do I apply for Social Security?

When you are approved for long term disability, the insurance company will require you to apply for Social Security. Its important that your symptoms are fully documented which is why we ask for a 1 hour appointment to spend time with you do document your deficits. We suggest you DO NOT WORK with the attorney of the disability company to assist you with your social security application.

Applying for Social Security

If you are under 50 years old, Social Security is not easy to obtain as it is assumed you can work in another position. Some symptoms strengthen your application to receive Social Security as they limit your ability to work. Our providers will discuss these with you as each person has differ symptoms that limit function.

The easiest and most convenient way to apply for retirement benefits is by using the online application. You will need to create or sign in to your personal my Social Security account. If they are not able to process your request, you will receive specific information about how to contact the office by phone or schedule an appointment. You can apply for retirement benefits up to 4 months before you want to start receiving your benefits. You can also apply by calling the office at 1-800-772-1213 (TTY 1-800-325-0778), Monday through Friday from 8:00 a.m. to 7:00 p.m. local time or visiting your local Social Security Office. (Call first to make an appointment).

Other websites providing you additional information and supports.

FMLA Frequently Asked Questions- https://www.dol.gov/agencies/whd/fmla/faq

The National MS Society has many types of employment and legal resources in writing and videos. The link below is only to some of them. Searching their website with the title employment issues will provide you with many more resources.

https://www.nationalmssociety.org/Chapters/MAM/Services-and-Support/Employment,-Insurance-Financial-Planning/Employment. You may also contact a Navigator at the National MS Society at 1800-344-4867.