self.watch

Howdy folks. Today I'll be discussing my frustrating, convoluted experience attempting to find medical help for my illness up to the point where I filed for disability.

When my symptoms first began, I genuinely thought I had some weird form of head cold which would clear up within a week or so. I didn't seek out any kind of medical treatment for the first few days and I really regret it. When I realized I was dealing with something serious, I figured I'd go straight to neurology and called up a local hospital system. Unfortunately, self-referrals to neurology were booked up for several months. It wasn't until the second or third week after onset that I finally saw my GP and told him what I was going through. He luckily took my case extremely seriously and made urgent referrals to endocrinology and neurology, although these still came with month-minimum delays.

I did get a baseline set of labs done which didn't show anything out of the ordinary aside from a slightly elevated TSH of 6.3, which had increased from my two-months-prior TSH of 4.8. I have a history of thyroid issues and I'll provide additional context in a later post.

The first 'specialist' doctor I saw was an ordinary optometrist. My eye strain had gotten severe and was making my work extremely difficult, and I was hopeful there was some kind of underlying physical cause that could be remedied. My floaters also made me concerned I could have an eye-related issue like post-vitreous detachment. I was actually hopeful I would have an astigmatism which would explain my double vision and starbursts around lights. Unfortunately, the doctor found no such issues with my eyes. She in fact commented on the excellent health of my eyes, and attributed my symptoms to 'eye strain' (which to be fair, I definitely was experiencing). She prescribed me a nice set of blue-light blocking glasses which actually did end up making my work more tolerable, at least for a while.

With the help of my girlfriend I managed to be seen by a local private-practice neurologist roughly a month after my symptoms began. Again, I was lucky to immediately be taken seriously; I've since learned that there is a lot of sexism and condescention in the medical field in complex case presentations. I was referred for multiple inflammatory marker labs and an MRI + MRA, which I had done as soon as the referred hospital had an opening. I received my results a week later... all negative. The med-speak for my MRI was 'unremarkable,' essentially implying my brain was in pristine physical shape. At this point I was expecting evidence of a stroke, tumor, or MS, so I was relieved.

My neurologist had me complete a few additional labs to scan for markers of a few rare neurological diseases with similar symptomology, these came back negative as well. Around this time I also sat down with the neurologist my GP referred me to, but he completely dismissed my condition as 'complex migraines.'

The short period of dealing with my illness had given me a crash course in medical terminology and professions. I realized that I needed to see an opthalmologist to rule out any diseases of my eye, and also perhaps receive a diagosis of 'visual snow syndrome.' I managed to secure an appointment with a local opthalmologist with a short wait. The appointment went quite like my others, with no significant findings and a suggestion that I seek help from another specialist.

Endocrinology was up next. A new set of labs showed that my TSH was mostly unchanged at around 6.8, and also highlighted an abormally-high DHEA (an androgen which is a precursor to testosterone), although this was dismissed as inconsequential. I was put on 75 mcg of levothyroxine, the generic form of Synthroid (a T4 supplementing prescription). I'll fast-forward here and say this was a massive mistake. For the next month I began suffering from something I dubbed 'doom anxiety' which became nearly debilitating (and I'll touch on more in a future post). Cessation of the drug with my doctor's consent a month later eliminated the anxiety.

The next specialist I saw was an ENT. I had read about certain breathing disorders (specifically upper airway restriction syndrome, or UARS) causing similar symptoms to mine. My ENT was very knowledgeable and took my case seriously. Although he pushed back against the UARS hypothesis, he did note that I have a severely deviated septum and that I certainly could be having breathing troubles as a result. He recommended I return for a CT scan of my sinuses, which I am actually scheduled to receive next week.

When I wasn't getting immediate answers by the traditional medical establishment I began chasing down a few rabbit holes I found in my own research. A large online community staunchly believes many neurological issues are the result of a misaligned neck, perhaps due to an injury or simply bad posture. There's a specialized field of chiropractic therapy that focuses on the upper cervical spine, specifically the mystical 'atlas' vertebra. Supposedly the slighest correction of this bone can cure many undiagnosed neurological issues. Specialists in the 'NUCCA' or 'Blair' technique have established themselves as the wizards of this domain.

While I didn't pursue treatment from one of these 'atlas specialists,' I did seek out a chiropractic physician to evaluate my neck and ensure there weren't any red flags that could lead to my symptoms. I found an excellent chiropractor who ran a set of X-rays on day one and referred me to get a complete neck MRI. I was used to it at this point, but the results came back all clear, aside from some slight postural issues I probably developed from spending too many hours hunched over in front of a computer screen.

Lyme disease is a true enigma. This seemingly arbitrary disease carries a massive community of confimed and suspected sufferers. It has become something of a catch-all for unexplained chronic illnesses, especially with neurological symptoms. After reading some stories of Lyme victims that seemed similar to mine, I decided to dive in head first. Given the confusion surrounding the disease, the Lyme community suggests you see a 'Lyme-Literate Medical Doctor' or LLMD for a diagnosis, which is essentially a doctor who has been trained in all-things-Lyme and certified by ILADS.

I found a Lyme-literate naturopath who was able to see me next-day for a telehealth appointment. After walking her through my case she claimed I was a "textbook Lymie" and referred me to get a thorough set of labs done by LabCorp, and an additional set of specialized Lyme and general neuroinflammation labs by a provider called Vibrant Wellness (which were out of insurance and cost me a fortune). The LabCorp test was a negative for Lyme, showing only two out of the minimum five bands required for a clinical Lyme diagnosis according to the CDC. The Vibrant test results were a bit more interesting, showing enough bands to be considered a positive case by the so-called 'alternate' criteria.

These results were enough for my naturopath and she referred me to a physician experienced in antibiotic treatment for Lyme patients. I started on 200 mg of doxycycline daily for roughly a month. I can't say I saw any improvements, and during this time I grew rather disillusioned of the Lyme hypothesis. I may have had Lyme at some point and I can't prove it didn't somehow contribute to my symptom onset, but at this point I'm unconvinced.

I should also note the results of my 'neural zoomer' results I received from Vibrant Wellness. While most everything came back negative, there was a single marker which was off the charts; my anti-S100b antibodies. This is an ambiguous indicator and can't diagnois anything specific, but does tend to suggest a form of blood-brain barrier disruption and is commonly seen after head injury.

At this point my family and I began attempting to treat my illness as a form of brain injury. I was seen by a neurologist at a renowned concussion clinic who performed an abundance of tests, determining my visual and vestibular abilities. Most of the results came back clear, aside from deficient depth perception, and well above-average balance in the presence of visual distractions. This is classified as 'visual dependence' and is actually not entirely positive, it suggested that my brain was weighing my vision far too much to stable myself, rather than using my inner ear.

In my sit-down with my neurologist I did my best to walk him through my symptoms, but I had a hard time putting into words just how severe and debilitating my condition had become. The doctor gave me a diagnosis he claimed to see often in post-concussion patients, something called PPPD or Persistent Postural-Perceptual Dizziness. While I didn't see how this diagnosis could account for the bulk of my symptoms, it did explain my visual hypersensitivity and general dizziness. Having a diagnosis at all was also validating.

Following the PPPD diagnosis, I sought out a doctor experienced in these cases. I managed to find an otoneurologist located near me who had done extensive research in PPPD and its differential diagnoses. He performed an extensive set of vestibular tests and listened carefully to my story. Although he wasn't able to identify any specific indicators in his testing, he helped me narrow down my rather nonspecific PPPD diagnosis to 'visual vertigo,' and also noted 'suspected visual snow' in his report. He suggested I see a neuro-ophthalmologist for an official 'visual snow syndrome' diagnosis and neuro-optometry for rehabilitation therapies.

As someone with no prior history of serious health issues, being thrown in head-first and passed from specialist to specialist was nothing short of overwhelming. I had friends and family with complex illnesses, but you somehow never really picture yourself having to go through something similar until it happens to you. I found it takes a great deal of patience but also determination to keep up with your health and advocate for yourself in the faces of dismissive or unconvinced doctors.

This concludes today's post. Up next I'm planning on adding a little more color to my personal health background and my thoughts on the potential causes of my injury.

Until next time,