Finding a Doctor Who Cares: “NOT AN EASY TASK BUT POSSIBLE” (updated and revised)

Finding a Doctor Who Cares: “NOT AN EASY TASK BUT POSSIBLE” (updated and revised)

Many individuals with various forms of Periodic Paralysis struggle to find doctors who can accurately diagnose and effectively treat their condition. The journey often involves seeing multiple doctors, enduring numerous misdiagnoses, and experiencing mistreatment. This can lead to feelings of despair and frustration, especially when misdiagnosed with mental health issues like hypochondria, malingering, conversion disorder or functional neurologic disorder (FND). The impact on mental health and relationships can be profound, as many patients are prescribed medications that worsen their symptoms.

My own experience was a long and difficult one. I saw 30 different physicians over six years before being diagnosed at the age of 62. The majority of these doctors were dismissive and unhelpful, leading to further suffering and loss of relationships. Even after diagnosis, finding doctors who understand and are willing to help has remained challenging.

Through these experiences, I've developed a plan to help others find a Primary Care Physician (PCP) who will work with them effectively. Here are the steps that can assist you in locating a compassionate and knowledgeable doctor:

1. Seek Referrals from Current Doctors: If you have a doctor who understands Periodic Paralysis but is moving on, ask for a referral to another physician. Ensure that your current doctor provides the new physician with detailed information about your condition.
2. Utilize Insurance Resources: If you have insurance, contact your provider and request a “patient advocate” or “case manager.” These individuals can help you find doctors who are familiar with your condition or willing to learn. Advocates can provide support and ensure your needs are communicated effectively.
3. Call Potential Doctors: If your insurance doesn't offer patient advocates, or if you need to find doctors on your own, start by calling the offices of neurologists, internal medicine doctors, and endocrinologists. Speak with office managers, explain your situation, and ask if their doctors are willing to work with you.
4. Explore Local Clinics: Larger clinics, especially those associated with hospitals, may have multiple doctors to choose from. Contact these clinics, explain your needs, and see if any doctors are willing to take your case.
5. Seek Help from Local Health Services: Without insurance, local health departments and services for the disabled can be valuable resources. They may help you find doctors who can provide the necessary care.
6. Think Outside the Box: Consider unconventional methods, such as local media. I once found a neurologist through a local television station’s medical Q&A segment.
7. Be Cautious with Specialists: While seeking specialists might seem like a good option, it can lead to disappointment. Many specialists focus solely on research or specific genetic forms of Periodic Paralysis and may not provide the help you need. Always research and approach specialists with caution.

Conclusion

Many individuals with Periodic Paralysis have found good doctors and receive proper treatment. However, for those of us who haven't been diagnosed, or who have variants with no known genetic code, finding effective medical help remains difficult. The reality is that many of us have to manage our symptoms without significant medical intervention. My husband Calvin (JD) and I, despite having knowledgeable doctors for my other conditions, still handle my episodes of paralysis and symptoms primarily on our own.

We have developed a comprehensive plan based on extensive research and trial and error, which we share through our website, forum, support groups, and books. This plan includes natural ways to manage symptoms and avoid episodes, helping others navigate this complex and often misunderstood condition.

For more information and support, please visit our website and join our community, where we share strategies, resources, and hope.

References:

• eHow. (n.d.). What Is a Patient Advocate?

Additional references and resources can be found on our website, PPN Support Group, in our books and through reputable health information sources online.

The following are our books:

"Living With Periodic Paralysis: The Mystery Unraveled"

"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"

"A Bill Of Rights For Periodic Paralysis Patients"

"What Is Periodic Paralysis?: A Disease Like No Other"

They are found on Amazon.com: https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1

 

Image is of a caring doctor listening to his patient.