The Muscular DystrophyAssociation (MDA) Care Centerutilizes a multidisciplinary teamapproach. Patients receivecomprehensive care from avariety of knowledgeablehealth care specialists duringtheir visit.

How can I or my family member obtainan appointment with the MDA CareCenter?The patient must have confirmed orsuspected neuromuscular disease coveredby MDA. (Contact MDA at 315-451-8269 or visitmda.org to determine if your diagnosis is one ofMDA’s 43 diseases.)

lf the patient has not been seen in an MDACare Center before or if the patient has notbeen seen for three years or more, a referralfrom the primary care doctor or specialist isneeded. The referral and all relevant clinicalnotes, EMG reports, muscle biopsy reports,genetic testing results, MRI reports andother pertinent labs (especially serum CPK)should be faxed to (315) 464-7328,Attention: MDA Care Specialist.

lf your insurance company requires anauthorization to be seen by an MDA doctor,this is a separate process and must also becompleted by your primary care physician.

How do I know if my diagnosis iscovered? Contact your MDA office at (315) 451-8269, to speak with your Care Specialist. Or go to www.mda.org and look underthe heading Diseases.

What if I don’t know what mydiagnosis is? Your referring doctor should know whatthe diagnosis or suspected diagnosis is.Talk to your doctor.

How long will I have to wait for anappointment?Currently, patients 18 and older arescheduled within 1 month of referral.Patients 17 and younger are scheduledwithin approximately 4 to 6 weeks. lf thereferring physician believes that thereferral is urgent, he or she can requestan urgent appointment.

MUSCULAR DYSTROPHY ASSOCIATION CARE CENTER

www.upstate.edu/neurologyMuscular Dystrophy Association Care Center

90 Presidential Plaza I Syracuse, NY 13210

315-464-4243 I www.upstate.edu/neurology

The MDA Care Center is located on the4th floor of the Upstate Health CareCenter, 90 Presidential Plaza, Syracuse.

Office HoursMonday - Friday 8 AM - 4:30 PM

To Make an Apppointment call:(315) 464-4243

For more information, contact: Tess OliverMDA Health Care Specialist(315) 451-8269 or (607) 767-3463Email: toliver@mdausa.org

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What do I need to bring with me to anew appointment?• A completed New Patient Questionnaire,

which will be mailed to you prior to yourappointment.

• Any medication that you must take duringthe appointment time.

• A complete list of medications you arenow taking, including the size (mg) andhow often you take it; ie: twice daily, or atbedtime.

• Any equipment such as wheelchair, walkeror cane that you use so that our therapistscan see you using them and determine ifthey meet your needs.

How long will the appointment take?This varies with your diagnosis andcondition. However, MDA Care Center visitsare longer than typical doctor visits, becauseyou will be seen by several members of theMDA team.

A new patient appointment takes 2-3 hours.

A follow up appointment takes 45 minutesto 2 hours.

You may want to bring a snack with you toyour appointment.

Will they give me my medications atmy appointment?No. lf you need to take medications duringyour appointment time, you need to bringthose with you.

Will they give me my prescriptions atmy appointment?Prescriptions that the provider feels areneeded will be prescribed electronically toyour preferred pharmacy.

Who will I see at my appointment? At MDA Care Center, you will first be seen byone of our Medical Office Assistants, followedby our MDA nurse.

At the MDA Care Center, you will be seen bya resident or fellow (MD who is training in aspecialty related to muscular dystrophy).Then you will be seen by one of ourphysicians.

The MDA Family Care Specialist (FCS), TessOliver, is a central figure at clinic visits. She isusually present on clinic days to answerquestions, distribute MDA educationalmaterials, coordinate any MDA services youmay require and assist with communityresource referrals.

Depending on your (or your child's)condition, you may also see our physicaltherapist, or occupational therapist.

If needed, a social worker or a nutritionalistwill be called into the appointment. OurMDA care specialist is also available to assistour specialists with your needs andquestions.

Will I need to see other specialists too?

Many patients with neuromuscular diseasedevelop complications in other bodysystems. Referrals to other specialists whoknow how to prevent and treat thesecomplications are frequently neededcommon referrals include:

• Cardiology (Heart specialist)

• Pulmonology (Breathing/lung speciaist)

• Endocrinology (for diabetes, thyroid orosteoporosis)

• SIeep Medicine

While there are not MDA specific lung,endocrine or sleep doctors, it is helpful if allspecialists are in the Upstate system so thatyour doctors can share medical informationeasily.

Appointments can usually be scheduled onthe same day as the MDA Care Centerappointment.

Can I get a flu shot at myappointment?

Yes flu and pneumonia vacines areavailable in clinic at the time of theappointment.

ls there a wheelchair clinic duringthe appointment?No, but there is a wheelchair clinicconnected to the MDA Care Center thatyou might be referred to. This is aseparate appointment and is set up bythe clinic team.

ls there a cost to be seen at the MDACare Center?Yes, if you have medical insurance(Fidelis, MVP, BCl85, Medicare, Medicaid,etc.) your insurance will be expected topay clinic costs. You may receive bills foryour care from Upstate UniversityHospital and/or your provider groups,depending on your insurance. The MDAprovides some monies through a grant toassist MDA patients with uncoveredmedical costs. However, NYS insuranceregulations do not allow the grant tocover insurance co-pays and deductibles.You will be responsible for paying these.If you do not have any insurance at all,the MDA grant may be able to pay forsome services.

MUSCULAR DYSTROPHY ASSOCIATION CARE CENTER