It’s been OVER ONE YEAR since I had my Functional Neurological Disease [FND] Diagnosis. And in that time, since then… Nothing’s happened.
Absolutely. Nothing. Happened. During All That Time… Just been ignored. No help, no offer of trying New Meds, Neuro Physio, Nothing. Radio Silence by Neurology Team of MAJOR NHS Hospital. FOR A YEAR.
I do now have a new appointment with the FND clinic in April [2026] - 13 MONTHS after they saw me last. Where they gave me the diagnosis… Based on a 40 Page Document I created, citing Every Single Symptom [big and small] that corresponded to an NHS Model of Diagnosis [from NHS Scotland; only place to have one that detailed]. And I only even found out about it because a friend happened to mention they had another friend who had been hospitalised because of their FND symptoms flaring up, and wondered if I knew what it was.
They didn’t even LOOK — the last time I saw their Neurology Team was in 2017 [3 Years after it started] and They MISSED IT. After 3 years they could have stopped it; even possibly reversed it. But They Missed It. Instead, I found out about it and had to FORCEFEED IT TO THEM.
In 2024 [SEVEN YEARS LATER], I finished the Document and my GP forwarded it onto the Hospital’s Neurology Team Specialists.
The Diagnosis itself came after Just Under Year on the Waiting List, March 2025. It took about 3 minutes, based on my document, to confirm that [paraphrasing] “Yes, I certainly definitely had FND and they would have a ‘multidisciplinary meeting’… BUT it was hard to see, after more than TEN YEARS, how anything could really be done to help.”
April 2026 they now want to see me again, and have blood tests. GREAT. TEN YEARS TOO LATE.
The Breakneck Speed is like whiplash.
... Oh, Yes. Truly.
I’d already been ignored for 12 YEARS BEFORE that; I’d had it that long [since 2013], and no one bothered Questioning why someone with “Just Fibro” was paralysed from the chest down, had 40 PAGES of complex and life-destroying Symptoms that did not in ANY way fit Fibromyalgia, no one was looking at me, properly diagnosing me, or treating me. Until found out about it and MADE Them.
Now it’s been 13 years. 13 YEARS with ZERO treatment or intervention.
I was 32 years old when this started. I was in a new job, just moved house, had a new dog, had a great career I’d worked HARD for.
But then my life was stolen from me… And as of the day before my 33rd Birthday, my employment ended [due to long term disability; “Too Sick To Work”] and I would never work in my dream job ever again.
I was an NHS IT Specialist Contractor brought in because I Specialised in Data Quality Analysis for Database Migration Projects, even with a Direct Contract ringfenced for me and rearing to go once the project officially started [we were doing the pre-migration stuff first, and they decided they wanted to keep me!...
BUT… Then. All. HELL. Broke. Loose Inside. Me. …..Forever.
After all this time, I’m physically Non-Functioning, paralysed from the top of my chest down, with virtually Zero Sensation on my skin to ANYTHING, ANYWHERE, tortured by Mind-Blowing Paresthesia Neuropathic pain, struggling with moving, Fatigue, messed up eyesight, and Crazy Bad Dysautonomia… And Every Single Year It Keeps Getting Worse. Degenerative. Life-Destroying.
…But, hey, what’s another year when I’ve been ignored for nearly a Decade And A Half already, anyway…??
It’s My Damned LIFE down the drain, that’s what, NHS People.
The Destruction of my Entire Damned Life that Just Keeps On Going & Getting Worse...
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