Post-Mortem Brain Tissue Analysis on those w/FND?

Does anyone know if there have been any studies/analyses of post-mortem tissue on those diagnosed w/FND--and if not, why not? I cannot help but wonder if, just like with Chronic Traumatic Encephalopathy, that although brains with FND may look normal on imaging and at autopsy (as far as post-mortem imaging goes), there might be the possibility of pervasive brain damage but on a microscopic level. As with Alzheimer's, CTE, and other degenerative brain disorders, perhaps there's a protein/peptide/molecule that is undetectable on current imaging, but that would show up in spades with tissue analysis? As far as what could cause such microscopic (but massively debilitating to the living individual) but pervasive brain damage, I'm thinking things like organophosphates, whether ingested on foods, or inhaled (pesticides)...I could go on/my reasoning but for now, will just see if anyone knows if there are researchers looking into this. If not, it's time.

[artmom]

I don’t know. Good question. But I imagine that as fnd is only now being recognised as an actual thing rather than a figment, that there hasn’t been a brain to study...? Or rather there hasn’t been the belief in the need to? Whether this belief will change when various imaging is still out of reach for dx even, I guess it’s a time will tell issue. And of course a person would need to donate their body to research too.

[Threewhitewesties]

Morning, I often wondered the same question but when I research I found nothing, I do believe that now we have the neurologist attention they may start to study the brain of a person who had FND after they have died, I do believe than the answers will come, i have expressed a wish that my brain be examined after death because the key to my problems is defiantly hiding in my brain. Kind regards and take care

[Junebeatle in reply to Threewhitewesties]

That’s something I have often wondered too having a science background & being a healthcare professional. I’ve expressed my wishes with my family that please study my brain upon death & find out what did this too me...I’ve recently been diagnosed with biotoxin illness from mold exposure in our current home (although I had FND before this) but never to this level. My Integrative doctor thinks it’s total body burden & immune related since I also have auto-immune disease. If you look at Dale Bresdenan’s work on inhalation Alzheimer’s (I have all those blood markers in the right direction and also positive screen for urine mycotoxins)

I’ll be tested for heavy metals next. I’m working on GI function too since I keep having Vit D deficiency’s & B12 low again despite eating well & living in Florida! I take digestive enzymes & ox bile with every meal, but must not be enough. The microbiome is very interconnected to the brain 🧠. Possibly working with a outside the box doctor may help you too! I did do TMS as well to help my severe depression to be able to get to this level of re-trying. I also tested positive for Lyme on Igenix, but I don’t know that lab is known for false positives & I don’t ever remember a tick bite. I also didn’t get sick often when my kids did, I would think I would be getting everything if I had Lyme.

[Jofachiz1]

Hi There

I’m not sure if this is of interest to you, but it’s just a different perspective of looking at our “neuro” symptoms.

My own personal experience has shown that even though symptoms may look like they are coming from your brain, they may originate with faults in your muscles and genetics.

I was misdiagnosed with FND but after persevering in trying to find the true cause of my symptoms, I was finally diagnosed with a genetic illness caused by a channelopathy. This kind of disease does not follow nerve pathways, will not show up on brain scans etc. but causes symptoms that look neurological like muscle weakness and paralysis, spasms, cramps , cognitive problems, parasthesias, slurred speech etc.

My understanding of the disease I have is that the messages get from my brain to the muscle, but faulty ion channels fail to carry electric signal to the muscle due to the malfunction of these channels which end up trapping sodium and /or potassium in/out the muscle causing it to become overactive/inactive. Symptoms can literally come and go in minutes or last hours or days or weeks.

The faulty genes can affect, skeletal, cardiac, neuronal tissues etc.

Symptoms wax and wane and triggers are things such as exercise, hot or cold temperatures, changes in air pressure or humidity, certain foods, stress, excitement, strong emotions, exercise, lights noise and the list goes on.

Research things like episodic ataxia, periodic paralysis etc.

It won’t necessarily show up in a blood test, brain scan or sometimes even genetic tests but that doesn’t mean it’s psychological.

Looks like FND, smells like FND but it’s organic.

Sometimes science already has the answers we need. Doctors just aren’t looking for them.

[Hidden]

This is incredibly interesting and I'm so grateful you took the time to post a reply. I'm wondering if you had to do the legwork & research and request you be tested for this, or if your doctor(s) decided to pursue testing for this on their own. Also, what are the tests you had to undergo?

As far as FND is concerned, I'm still of the belief (and would rejoice to be proven wrong) that this "diagnosis" is designed to becalm the legions of people getting sick in our increasingly toxic world (thinking of pesticides on food, plastics in our seafood, flame retardants on our clothing and carpets, etc., sprays we use on our gardens, the air we breathe if we live near agricultural areas or industrial areas, and on and on...), to perhaps buy them (the neurologists, not the patients!) time until we have better systems in place for running neuro diagnostics in vivo. I fully realize I might sound like a conspiracy theorist here, but I am not; I'll leave it at that. Also, more about me: I haven't even been diagnosed with FND (I have been diagnosed with regional dystonia by 2 different movement disorder neurologists), but I have a big heart for those who are experiencing symptoms which I definitely relate to--as many were there before things progressed for me.

But I ask you about those tests because they could be a huge part of helping people get to the cellular root of their issues. Thank you again for posting this. I almost forgot to ask--is there a cure or at least help for your symptoms?