Misty tirelessly advocated for herself until she received a referral to a neurologist that would ultimately lead to finally getting answers she had been searching for. Here she shares her long journey searching for someone to look into her symptoms, her diagnoses of two rare conditions and how she gets through each day.
Looking for Someone That Would Listen
I started feeling clumsy in May 2017. My legs kept giving out on me [and] I felt very weak. I had several doctor visits, including a rheumatologist referral with blood testing. The diagnosis identified fibromyalgia and elevated inflammation markers of an unknown origin. The diagnosis of fibromyalgia seemed to account for my weakness, aches and pains.
Nearly a year later in March 2018, I had severe numbness and tingling in my hands and feet, which by the next day also affected my mouth. I feared for my life, as day by day my symptoms worsened. I frantically sought a solution [for] my deteriorating health from doctors and hospitals, only to be told many times by medical [professionals] that my health complaints appeared to be related to anxiety and/or potentially a behavioral health issue.
After seven doctor’s visits, I finally got referred to a neurologist with the stipulation that I would also go to a behavioral health facility. By this time, my legs were no longer working, and I was unable to stand on my own.
Finally Receiving Answers and Accurate Diagnoses
When the neurologist office [finally] called me to schedule a routine appointment months later in August or September 2019, I indicated to the person setting the appointment that I feared I was going to die if I didn’t get medical help now. Ten minutes later I had a same day appointment. Thank goodness. I cried knowing I might get some answers to my dilemma. Within minutes of the office visit, the neurologist immediately referred me to the hospital where I was admitted as a patient with Guillain-Barré Syndrome (GBS).
Over the next few days, in the hospital awaiting results of a lumbar puncture and other tests, I became totally paralyzed from the shoulders down. On the fourth day I was diagnosed with GBS. I understand that in some cases it can be difficult to differentiate between the acute neuropathy of GBS and the similar but chronic neuropathy called [chronic inflammatory demyelinating polyneuropathy] (CIDP).
After seeking more information and the support [from] the GBS-CIDP Foundation, I obtained medical assistance from a “Center of Excellence” neurologist with expertise in GBS, CIDP (chronic inflammatory demyelinating polyneuropathy), and variants. I got the more accurate diagnosis of CIDP which enabled me to get useful treatment.
After being released from the hospital in April, I had started to become sensitive to lights, getting massive headaches, I knew something else was going on. An MRI, vision exam and neurological testing including spinal tap concluded that I was not only fighting CIDP but also idiotic intercranial hypertension (IIH).
Great Support System and Resources
My biggest support is my family. They have been so helpful taking time off of work to drive me to appointments, helping me do physical therapy at home, praying for me and providing amazing emotional support.
I have also found comfort with the GBS-CIDP Foundation. Their group of volunteers were a godsend in a dark time. I might have remained misdiagnosed, put in a metal health facility or died from untreated CIDP if not for the support and education of the GBS-CIDP Foundation and the expertise of a neurologist who recognized my health disorder as CIDP. That’s why I decided to volunteer with the foundation to help other patients get useful support and education. The foundation has also taught me the importance of advocating for myself and others in regard to health issues in my community and the United States.
This journey would be much more difficult if I didn’t have the patient support groups, if I didn’t have family I could reach out too. It would also be more difficult to manage if I didn’t understand that I have to prioritize self care first.
The Spoon Theory
The tricky part about managing two rare conditions is trying to manage the symptoms that both rare diseases cause. At times, [it] can [get] difficult differentiating between symptoms from one condition to the other.
I was told once by a counselor after I was released from the ICU that you wake up each day with [a limited number of] spoons. It takes a spoon to get out of bed. It takes a spoon to shower. What you do with your [remaining] spoons determines your day. Once you have a chronic illness, or in my situation, two chronic illnesses, you have to determine how you will use your remaining spoons. Will you go to dinner with a friend? Will you brush your hair? Any activity you do takes away a spoon. You have to make sure you’re not using all of your spoons because as soon as they are gone your energy is depleted. It’s like putting a pot of water on the stove to boil, if you leave it on the stove too long unattended to then all of the water will be gone and you are left with an empty pot. I know it is difficult to go from caring for everyone else, doing everything so independently to becoming fully reliant on others for care. You can better care for yourself and in return that helps others around you.
It’s Okay to Not Be Okay
My advice to others would be that although you might be fighting some horrible illnesses, are struggling and feeling stressed, that’s okay. Dealing with my illnesses I have learned it’s okay to not be okay all the time. You are going to mourn over the loss of quality of life you used to have. It’s okay to reach out to a counselor and get coping skills. It’s okay to ask your loved ones for help. Don’t beat yourself up! Give your self grace. Love yourself and embrace changes. Never give up hope. Keep fighting. You got this!
As I am re-learning to walk, I stumble and I fall. However, I will always remember this quote by River Maria Urke: “If in life you stumble, make it part of your dance.” So instead of getting upset with myself about my shortcomings, I embrace them. My illnesses have taught me that life is too short. So if I stumble and fall I will do so gracefully and remind myself that there was a time I couldn’t move my limbs at all.
Living with chronic inflammatory demyelinating polyneuropathy (CIDP) and idiotic intercranial hypertension (IIH)
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