What’s Wrong with You, Anyway?

What’s wrong with you? This seems like a very likely question given that I have been writing posts since March 2019 and have never succinctly shared what exactly is making me sick. I’ve talked about the symptoms, but not the diagnoses. To be fair, for a long time I didn’t know and I am still on the hunt for answers. Perhaps sharing what I know would be helpful to you?

To start, the most clear-cut diagnosis is Meniere’s Disease, an inner ear disorder that causes hearing loss, ringing in the ears, and vertigo. It usually starts in one ear and spreads over time to the other ear. I first experienced very significant hearing loss in my left ear at the beginning of 2014. However, I did not get a diagnosis until last fall when I saw a specialist who called it a “slam dunk” case.

The second diagnosis is Vestibular Migraines, a disorder of the nervous system. In general, a migraine is considered an electrical storm in the brain causing a wide range of debilitating symptoms. With the Vestibular Migraines intense vertigo and nausea are the primary, but not exclusive, symptoms. Interestingly, the inner ear has five distinct vestibular organs. So, it may come as no surprise that the incidence of migraines in the general population is ~25% and 56% in the Meniere’s population.

The third diagnosis is Functional Neurological Disorder (FND), a very poorly understood disorder of the brain and nervous system in which the neurons are misfiring much like the pistons in a car engine. Doctors and scientists are only just beginning to understand the disorder. Although the symptoms of FND can be clinically diagnosed, their cause cannot be determined.

Several other diagnoses being tossed around to answer “what’s wrong with you?” are Chronic Fatigue Syndrome, Fibromyalgia, and Frontotemporal Lobe Disease. Additionally, testing has confirmed high levels of mycotoxins in my body associated with mold colonization in my gut. The particular mycotoxin being produced is known to impact the kidneys, brain, and nervous system.

Aside from the mold, the common thread between all these disorders is that the doctors just can’t explain what is causing them and why they all happened at the same time. Considering that most of these symptoms started immediately after my February 2019 Lumbar Puncture, I believe that was an inciting incident.

What’s fascinating is that the brain-mapping that was done recently clearly shows the brain misfiring. Also, my brainwave patterns are consistent with those of patients known to have cerebral spinal fluid leaks from a lumbar puncture.

Why am I telling you all of this? Why am I putting myself out there in this way?

First, I want to be more transparent and give better context for what I am experiencing. Most of us find comfort in labels even when situations like mine are hard to put in a box. Part of me has not wanted to be defined either by my illness or it’s labels. Now, I understand I can build power out of the lessons of my illness, the labels, as well as my search for answers and solutions. I am hoping the context I am providing can help others connect the dots in their own lives, their own struggles.

Second, I want to offer hope to anyone who also has been diagnosed with any of these disorders. Additionally, I’d love to give hope to the growing number of folks navigating the medical system with a mysterious catalog of symptoms. I have joined Facebook groups for Meniere’s Disease and Functional Neurological Disorder. Rather than offering me hope, they are chockful of despair. While the despair is absolutely understandable considering how debilitating these disorders can be, Its About the And. There is despair AND hope; failure and triumph; loss and gain in any illness like this. “What’s wrong with you?” may be the question of the day, but don’t forget to ask “what is right with you?”

Third, for the broader population, this belief in the “And” is just as relevant. We all have hard days, weeks, months, and even years (Hello 2020!). These moments are hardest when we think of life as binary; either/or. I am guessing all of us could use some inspiration to hold the dark with the light, the good with the bad, and see the glimmers of hope through the grief and sadness. I’ve come a long way since my body first collapsed in on itself. There have been terribly dark days even recently. I still struggle. BUT I have figured out a delicate balance that allows me to live and make the most of my possibilities. What saves me is my belief in the AND, courage, faith, and friendship. This leads me to my fourth reason.

So many loved ones have and continue to support me through the ups and downs of this illness. I want to give back and offer what support I can to you. Whether it’s for knowledge, inspiration, or conversation, I am here for you. So, what’s wrong with you? And how can I help?

May it be so!