# This Mom With CIDP Is Fighting for Answers By Catherine Cooke Sep 12, 2019 • 3 min read _Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._ “You don’t look sick.” This is a refrain Carrie Szeles hears a _lot_. She wants others to know what it’s like to live with CIDP, or chronic inflammatory demyelinating polyneuropathy, an autoimmune disorder that destroys the protective covering of nerves and leads to numbness, loss of balance, and nerve pain. For Carrie, a spunky mother of 5 children and 2 stepchildren, not outwardly looking sick has meant many doctors and medical professionals have turned their backs on her in the battle to understand what is happening in her body. “Nobody wants to touch you [or take on your case] because they don’t know what’s going on,” said Carrie about her care journey. Carrie’s first visit with a neurologist was incredibly traumatic. Convinced that Carrie was faking her symptoms, the neurologist manipulated her cramped foot until she was in tears. He also performed balance tests where he would let her crash to the ground to see if she truly couldn’t instinctively regain balance. Carrie asked the neurologist to test her peripheral nervous system, as she had a hunch that this could be the issue based on her symptoms. He refused. “My doctor treated me like I just Googled everything and was one of those who diagnoses themselves. He didn’t realize that I am well-educated and had taken courses that deal with medicine,” she said. At the end of the visit, the neurologist told her it was all psychological and she must have manifested the symptoms due to trauma from a forgotten rape. It was an inaccurate and inappropriate diagnosis, and it took Carrie several months to come to terms with the physical and emotional abuse that had occurred in that room. When she went to read the report from her visit, she was shocked: “He literally wrote a report so that no other doctor would touch me until I realized it was all in my head.” Digging further, she also found ultrasound results that showed two cysts that were potentially cancerous. He had entirely ignored this information. Carrie was outraged. Pushing for answers, Carrie found new doctors and a neurologist. On December 7, 2018, Carrie discovered one of those cysts was actually cancerous. Just 5 days later, she received her diagnosis of CIDP, which does in fact affect the peripheral nervous system. She was right all along. Today, Carrie is still in search of answers. There is no cure for CIDP, and she has many additional symptoms that remain undiagnosed. Doctors often don’t thoroughly explain her disease and treatment plan, giving her medication with no explanation. At one appointment she was told it was up to her to push for more information and do her own research. She’s found support in a Facebook group of over 6,300 people with similar symptoms and stories of being ignored by medical professionals. It’s helped her realize, “the most important message is advocating for ourselves. Even when we think we’ve advocated enough, we probably haven’t.” Carrie never wants other patients to have to go through her experiences with navigating the medical field. By providing her de-identified records to advance research through AllStripes, she can learn more about her own disease, contribute to drug trials and research from home, and allow other CIDP patients to see insights from the research. “I was dealing with all the issues of being ignored and being told I was crazy. I didn’t want others to keep going through the same thing, so if there was any way I could help, then I definitely wanted to.” ## We know that every person's story is unique and deserves to be heard. ### Create a List List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records. #### Ensure You Have the Appropriate Legal Status It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own. #### Gather and Organize the Medical Records in One Place It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins. #### Review the Medical Records to be an Informed Advocate The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan. ### Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association ### 1. Build a support network. When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own. There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving. ### 2. Stay organized. The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress. ### 3. Explore treatments and clinical trials. We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide. ### 4. Make time for self-care. It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup. ## Having trouble managing your loved one's medical records? Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth. #### LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021 ##### Data from real-world medical records: - 16 yrs old Median age at enrollment - 38% Female - 15 providers/patient - 7.5 years of data/patient ##### Data from patient-reported outcome (PRO) survey We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below. ### What to Expect Before your video call: - Book Your Assessment - Visit your to-do list on your PicnicHealth Research Dashboard or click the scheduling link sent to your email. - Receive Confirmation - Check your email for a confirmation with your scheduled video call time and instructions. On the day of your video call: - Click on Video Link - Join your personal video call using the link sent by email, or text message, or find it on your research dashboard. - Meet your nurse - A Registered Nurse (RN) will guide your virtual assessment, which will last about 30 minutes. - Complete the Physical Activity Assessment (INCAT) - Complete the Movement Assessment (Optional) #### Earn Compensation Receive up to $55 for your participation: - $25 for completing the Physical Activity Assessment (INCAT). - $30 for the Optional Movement Assessment. **Recording:** Your research assessment may be recorded to ensure accurate data collection. If you participate in the optional Movement Assessment, it will also be recorded. These recordings may capture your voice and responses, but identifiable information like your face, name, or background will be removed to protect your privacy. #### Need Help? If you have questions before, during, or after your interview, we’re here. [navigate@picnichealth.com](mailto:navigate@picnichealth.com) [(415) 680-3085](tel:+1-415-680-3085) ## Learn more about contributing to IgAN research with PicnicHealth.