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When we first receive a MS diagnosis, our understanding of the disease will likely be limited for obvious reasons – it is something new, foreign, and confusing to process. This is the time to start educating ourselves and others. The more knowledgeable you are about your disease, the more it will help you to advocate for yourself and communicate more effectively with your healthcare team of doctors. It is up to you as to how you choose to build and manage a healthcare team. The main goal is to build a team that has your back – a team that will help you to move forward in good health and improve your quality of life as best as possible.

With MS, most people may rely solely on their primary care physician and a neurologist for care – especially in the early stages of diagnosis. Sometimes, especially in rural areas, people may have limited access to care and must rely only on a hospital or their primary care doctor. This is unacceptable, but sadly unavoidable for some patients. There has been some progress made with this issue and more awareness is out there. Patient advocates, activists, and healthcare and MS organizations have been working hard to make sure all who need it can receive quality MS care. 

Let’s talk doctors. Your neurologist is the central player in treating your MS. Take the time to choose the right one for you and your needs. Make sure your neurologist has a strong reputation in the field, is accessible for in office and virtual appointments, and has a bedside manner that puts you at ease. This can be easier said than done and some people will resort to “firing” their doctor when the relationship isn’t working. See more on this topic featured on page 9 in the winter 2023 issue of MS Focus Magazine.

Your healthcare team will typically start off small, consisting of just your PCP and Neurologist. This will typically grow larger as time goes by and other health issues arise. For many patients, their healthcare team needs will be more extensive and will include a variety of specialists and healthcare professionals. I happen to fall into this arena as I have a variety of other health issues besides or unrelated to MS. Here’s a sample list of some of the key professionals I now have included in my health/treatment team:

• Primary care physician: Oversees general healthcare needs and referrals as needed.
• Neurologist: Oversees overall MS care and other neurological needs.
• Psychiatrist: Oversees psychotropic meds and follow up visits regarding mental health status.
• Social worker/therapist: Talk therapy, self-care/mindfulness tips/tools, breathing exercises, and mental health resources for anxiety, PTSD, emotional issues related to MS.
• Urologist: Addresses urinary/bladder issues as needed.
• Gastroenterologist: Oversees GI health, IBS, medications, and colonoscopies.
• Otolaryngologist (ear,nose,throat): Oversees chronic sinus issues, ear problems, and Meniere’s disease. 
• Neuro-ophthalmologist: Specialist eye doctor to oversee chronic dry eyes, Sjogren’s, and vision health.
• Dermatologist: Assists in skin cancer checks, rosacea, and skin issues related to Raynaud’s Syndrome.
• Dentist, endodontist, oral Surgeon: Oversees oral health and trigeminal neuralgia.
• Occupational therapist: Assists in needs for better mobility, strength, and accessibility tools appropriate for day-to-day life.
• Physical therapist: Supplements OT therapy as needed.
• Speech therapist (pathologist): Helps with communication issues, swallowing, and tools for cognitive and speech improvement.
• Dietician/nutritionist: Assists with dietary issues, changes, and needs for IBS/GI health.
• Nurses and PA assistants: Essential. These people are the lifelines to help with communication, support, and assistance in between doctors and so much more.

This is my healthcare team. Yours may differ and it should, based on your own medical and lifestyle issues. Our health situation may change from time to time and the same can be said for those who are a part of your healthcare team. Doctors and nurses are people too. They have their own lives, which can mean they may not always be there for us. Or we may decide to make a change ourselves by firing certain doctors who’ve become a hindrance to our healthcare. Regardless of the situation, all of us will likely need to make adjustments to our team roster. Change can be unsettling, but it can also be a blessing.

As you build your team, it’s important to find your best way to stay organized with everyone involved. This includes doing some homework sometimes – take notes, ask questions, raise concerns, and never be afraid to speak up when problems arise. Make sure your team is in the loop with everything you have going on. Also, make sure everyone is up to date with your medical chart details regarding all notes, appointments, medications, supplements, treatments, and surgeries. 

The more compliant, reliable a patient you are in your appointments, following doctors’ recommendations, communication, and keeping up with any medications prescribed to you, the better your doctor-patient relationship can be. First and foremost, you must be your own advocate. If things start to go off track somewhere, make sure to address these issues with those doctors as needed. 

A happy healthcare team is a happy, healthy patient.