Progression Demands Further Investigation
Christoff Truter
Spousal caregiver
As soon as an FND diagnosis is made, the patient is thrust into a
multidisciplinary treatment approach, which can include psychologists, psychiatrists, physiotherapists, and sometimes
speech or occupational therapists, depending on how the disorder presents itself.
In our case, the neurologist at the time, a fellow who didn’t tolerate any input from us to the point where he barely
considered the medical history presented to him, immediately booked an appointment with a psychologist and a
psychiatrist, along with handing us the customary FND sales-pitch websites.
As we left his practice, he put his hand on my wife’s shoulder and told her she was going to "think herself better,"
which raised red flags.
When we got home, I started going through the materials presented for laypeople on the websites the neurologist had given us, but they left me with more questions than answers.
Our first stop was the psychologist. She was very sympathetic, but as I later learned, somewhat misinformed about the DSM-5 and the diagnosis she was meant to assist with. At the time, I didn’t even know the manual or the disorder existed.
I explained to her that what puzzled me most was how my wife’s health followed a clear path of progression, which seemed at odds with the literature.
My wife initially started walking into things and complained that she struggled to keep her eyes closed at night, and that as soon as she forced them shut, she would go dizzy. At the time, she was an incredibly avid netball player, but she also became progressively weaker to the point where she decided to switch sports.
It was around this time that the first escalation happened.
She had a severe gastroenterological event where her abdomen bloated to the point that she appeared highly pregnant. An endoscopy was performed, but it didn’t reveal anything. She was diagnosed with her first functional disorder (IBS) and sent home with a bunch of antibiotics. Over the following months, it gradually improved.
A year later, she collapsed in pain on the floor due to kidney stones, and an extremely talented robotic surgeon expertly removed them.
Almost another year later, a gynaecologist diagnosed her with stage 4 endometriosis and removed several nodules.
Then, five months after that, the second escalation happened. She woke up with severe vertigo and could barely walk (completely off balance).
We initially suspected a middle ear infection or something along those lines. And, funny enough, the GP at the time observed redness around her tympanic membrane (eardrums). What concerned him more, though, was that she also presented with a tremor in her right hand. A bunch of blood tests were done, and everything came back normal.
This is where the first neurologist got involved, around the initial observation of Cervical Stenosis.
From that point onwards, the symptoms just worsened: severe brain fog, memory lapses, slurred speech, even voice tremors at times, along with intense eye strain, fluctuating heart rate, and perhaps the most visible issue, facial asymmetry and a 20 percent muscle function deficit on her dominant side, as determined by the sport science department at the local university.
These symptoms gradually developed over the following years, leading to her current condition. In addition, her gut can no longer tolerate lactose or gluten. She can barely eat anything and is now on a liquid diet. Even a low FODMAP diet has had no effect. Now, her hair has begun to fall out.
To all of this, the psychologist merely responded that the psychogenic causes described under the FND diagnosis could "definitely explain" what we’d been seeing.
However, when you consult the DSM-5, the differential diagnostic notes around FND clearly state that "reassessment may
be required if the symptoms appear to be progressive."
Unfortunately, at this point, we are constantly being met with the functional mantra.
That said, as I’ve stated elsewhere on this website, I believe that FND is a central nervous system reflex.
The progression we’re observing might not even be neurological.
If one considers the magnitude of symptoms, including facial asymmetry, being attributed to FND, one quickly realises that adherents believe almost all neurological symptoms can be mimicked by this condition.
But instead of being a mimic, I contend that FND is simply a central nervous system reflex, much like pain is a reflex in other conditions.
The underlying cause(s) still elude us...
Dear Christoff
I see so many alarming parallels with my own experience and your wife's. (though I 'm in the UK). I could go on about myself and the debilitating neurological symptoms I've experienced. This is why I'm compelled to write.
I'm no Doctor, just a reasonably well educated lay person who had to learn self advocating.
The 'FND' I was diagnosed with was essentially cured by 12 months of heavy dosage combination antibiotic therapy. Like yourselves, I didn't buy into the FND diagnosis. I followed my instincts and sought the opinion of a private specialist (not a neurologist!) Also I share the same concerns about the whole FND thing. It's now my special pet hate. FND as you know isn't curable with antibiotics, any more than infection isn't curable with CBT. As far as I'm concerned FND = Frankly No Diagnosis. Don't let the rigid dogmatists get you down!
(Have you come across David Tuller's posts?)
https://virology.ws/2020/01/07/trial-by-error-some-more-thoughts-on-functional-neurological-disorder/
If I had bought into it, I'd have no doubt deteriorated significantly as this was my overall trajectory. I'd have a worse visual field deficit (I developed optic atrophy), I'd be wheelchair bound as my legs stopped working, and still be having what was assumed to be psychogenic seizures. Like your wife I also recall unpleasant odours, (smell hallucinations) to name but a few of a vast array of weird neurosymptoms I've experienced. I had years of medical investigations (and gaslighting) which found nothing. I too was investigated for MS, had tremors, ataxia, balance and sleep issues. Had an LP. Also negative.
I was too difficult a patient. Too threatening to their egos maybe? I'm a middle aged female, with non specific symptoms and was told they were most likely an abnormal response to normal phenomena. In other words, Doctors didn't believe me and I conveniently fit the (hysteria) profile.
My Lyme tests came back repeatedly negative. Though Dark field microscopy of my blood told a different story.
I only found the real cause of my symptoms when I sent blood off to a lab in Hungary. Not only did I have a chronic Lyme infection, but common co- infections Babesia and Bartonella, one of which needs antimalarial treatment as it does not respond to most antibiotics. It showed up bacterial fragments with (fluorescent) very specific markers attached, so no possibility it was anything else other than borrelia sl., the Lyme bacteria. My antigens were bound up, so I never would test positive for Lyme with standard testing methods. These need to be freely circulating in the blood to be detectable by commonly used Lyme antigen tests. Thus supporting the scientific evidence these tests are only right half the time at best.
My hair was also falling out, but stopped after the first day on antibiotics.
I would seriously consider if you already hadn't some kind of chronic zoonotic infection, not easily detectable by standard methods of medical testing. There are many, quite a lot Dr.s have never even heard of, or would deny exist in your country. (Tick borne diseases are carried in ticks on migrating birds). In which case prednisone may not be the best solution in the long term for you wife. With Lyme like infections it has temporary relief but with immunosuppression any potential underying infection can flourish making deterioration of health inevitable. If autoimmune in nature, it should reverse the disease. Steroid resistant disease may be a red flag for disease of infectious nature.
I still have Babesia as even after treatment the lab managed to culture it from my red blood cells. Also I still feel symptoms though thankfully much less neurological than they were. Though fatigued I'm a whole lot more functional, my tremors stopped, my legs work again and no more photophobia/hyperacuisis/ seizure like events.
One distinguishing hallmark of Lyme, is how symptoms shift around the body. One day there's tingling or numbness in one arm the following day it might be in your diametrically opposed leg. Cranial nerves and spinal nerve roots are commonly affected causing inexplicable back pain and fasiculations. Could her facial assymmetry be Bell's Palsy?
If there are ticks where you live, there's tick borne zoonotic infection without a shadow of doubt. In my relentless search for answers I came across papers which show Babesia infection can co exist with Malaria. And that Babesia is also found on the African continent.
Also might be worth noting while most clinicians know little to nothing about these infections, vetenarians do. Babesia causes red water fever in cattle.
I Had bites from ticks which came off pets so exposure risk is not always that obvious either.
This link may be of use. There's a form to check for possible exposure risk you and your wife may have had to pathogens and parasites.
https://www.parasiteclinic.co.uk/
I really hope this is helpful in some way, and you get to the bottom of it. Follow your instinct, there's always hope. Best wishes to you both.
Regards, mel in the UK