The Endless Days Get A Light at the End of the Tunnel – My Medical Journey Until Now
“Persistent Horrors Survivor”: Craniocervical instability (CCI) · hEDS · Dysautonomia · ME/CFS
My Story:
I have had a symptom load that most physicians did not believe until objective evidence on imaging and diagnostic tests finally showed what was wrong, and some are even skeptical enough to refute the objective evidence, claim it is faulty, and that I or the ordering physicians somehow manipulated them (we are talking things like repeated blood work and gastric emptying studies/ repeated imaging). I was however, blessed to have a core team that was compassionate and comprehensive, despite ill-informed physicians claiming it was psychosomatic/functional neurologic disorder (FND), that still listened to their patient and did what was needed, including advising me to seek out specialists that were actually knowledgeable. Many of those compassionate doctors expressed that even they had a significant amount of skepticism, understandably due to the complexity that is, until my labs/images came back with clear, undeniable results. I would be lying if I said that I didn’t question myself. Especially as I have a diagnosis of PTSD, I did understand where the thought was coming from.
The core team of my primary care physician, allergist/gastrointestinal specialist (GI), occupational therapist, and physical therapist continue to be instrumental in managing my care and advocating for my needs, especially as I have sought research specialists’ evaluation for rare and complex conditions that other physicians refused or were not able to work up or treat. They have also helped me to manage the misdiagnoses from unequipped ‘specialists’, including in acute ER events, and to explain to new providers what is presently happening with my case. They have also been the quarterback for getting me to these specialist researchers, ordering the preliminary imaging and making referrals, as well as collaborating with them on executing my care plan.
I am in constant pain of varying quality and intensity and have been since as long as I can remember. I have never had true full relief, even with medication, including IV analgesic, so it was decided initially to be largely psychosomatic. Vision and hearing disturbances, including blurriness/snow/double vision/vertigo/sensitivity to light&sound/tinnitus/hearing loss, as well as temperature sensitivity, easy bruising, tremors, extreme fatigue, and sensory impairment had previously been attributed to atypical-non-responsive-migraines or damage from being a competitive shooter in my youth/lead poisoning, if not also psychosomatic. Proprioception challenges were brushed off as just being clumsy. Excessive salivation with hives and pain upon eating was dismissed as hypervigilance, frequent UTIs and pelvic/abdominal/back pain brushed off as normal for women my age or “just endometriosis”, sensation differences/tingling/numbness were blamed again on me “thinking too much about my body”, neck pain and radiculopathy categorized as a normal case of bad posture or hypervigilance again from “being born in Kentucky” (that was really a pain management doctor’s actual diagnosis).
These surgeries are not a magical cure, and likely there is some degree of damage that will be lasting, and there is always the potential for complications ir failure, but I have a light at the end of a very dark narrow tunnel for the first time ever. At the very least, I have an explanation for my suffering and the best physicians on my case.
…Read the full story on her Substack →
Republished with permission, published originally Dec 5, 2025, on Substack: https://substack.com/home/post/p-180802911
