My Journey to a Meniere’s Disease Diagnosis: From 2020 to 2025
In October 2025, I received a definitive diagnosis: Meniere’s disease. While the diagnosis itself wasn’t a surprise, the path to understanding what was happening to my body has been long and fraught with uncertainty. Here’s a look back at my journey, starting from when the first symptoms appeared in 2020.
The Early Days: 2020 – A Growing Sense of Unease
It all started in 2020. I began noticing unexplained dizziness and a feeling of imbalance. Over time, I also struggled with word recognition and had difficulty speaking, especially during episodes of vertigo. These symptoms were unsettling, but they didn’t yet make sense in a larger context. I sought medical help, but no clear answers emerged.
Testing and Specialists: 2021 – 2022
As my symptoms persisted, I underwent a series of tests in 2021 and 2022. Audiograms were conducted to check for hearing loss, and while I noticed some issues, they weren’t drastic enough to point to a specific condition. I also visited specialists to rule out neurological disorders like Parkinson’s disease and Multiple Sclerosis. Although some tests, including a DAT scan and MRIs, returned normal results, my symptoms persisted.
The uncertainty continued. I had nerve conduction studies and blood tests for things like neuropathy, myeloma, and immune-related issues, but no clear diagnosis emerged. Meanwhile, the symptoms—numbness, tingling, and tremors—only seemed to increase in frequency and intensity.
Worsening Symptoms and More Tests: 2023
By 2023, the situation had become more frustrating. I started experiencing issues like lack of coordination, difficulty walking, and trouble with word recall. I couldn’t ignore it any longer—something was clearly wrong.
Despite several tests, the diagnostic process seemed to hit a wall. I had a combination of unexplained symptoms, and while some of the tests showed abnormalities like Kappa Light Chain MGUS, none gave me a clear path forward. My doctors continued to explore potential diagnoses, but nothing seemed to fit perfectly.
The Final Diagnosis: 2025
Then, in October 2025, everything changed. After undergoing more specialized testing, including video-oculography and audiometric exams, I was officially diagnosed with Meniere’s disease. This finally provided an explanation for the hearing loss, dizziness, and other symptoms I’d been dealing with for years. The fluctuating nature of my symptoms—especially the episodes of vertigo and hearing impairment—was a hallmark of Meniere’s.
Looking Forward
While I’m relieved to have a diagnosis, the journey ahead might be difficult (or not). Meniere’s disease doesn’t have a cure, but it can be managed with treatment. Knowing the cause of my symptoms will help me better navigate my options for symptom relief and manage expectations moving forward.
For anyone out there experiencing symptoms like mine—dizziness, hearing loss, or issues with balance—please know you’re not alone. Getting a diagnosis can take time, but persistence is key. I hope my story serves as a reminder that it’s okay to keep seeking answers, even when the path is long and uncertain.