I have more sense than a team of Neurologists

[alivenotkicking]

I'm guessing FND and GET are the modern day equivalent to hysteria and blood-letting with leeches...

 

[Viala]

It's really sad. Misdiagnosis is the easiest way to ignore CFS indefinitely, especially when they can't differentiate between CFS and depression. When their therapies don't work they blame it on the patients, very convenient and no one can prove they're wrong. If they mix non CFS with CFS patients because there's no real test to tell who has what, GET will always receive credit for helping 'CFS' patients.

They should have learned something after Alzheimer to not to gaslit people with new and not well known symptoms, but that would work in a world where doctors help us. What they do instead is they protect the business and don't care about the patients. Patients with diseases that no one knows how to treat are inconvenient, so the easiest way is to exclude them to not to bother anyone or include them in the paying system by giving them some mental diagnosis, best if it requires pharmacotherapy, and this additionally makes pursuing real diagnosis much more difficult so it makes their life easier.

 

[Alvin2]

It's a perfect cult.

It is, what i find interesting is the circular logic, they have invented "irrefutable" explanations for everything and they act as if they cannot be wrong. And when you explain that 2 plus 2 does not equal 5 they turn on you.
It is a cult built on a house of cards.

Not surprised they are true believers. But it saddens me, because it's almost impossible to make progress when those in power believe progress is not necessary.

Agreed.

If you do accept it and follow the program but do not get better, then you did not properly comply and they will express disappointment in you, but you don't count.

If you do accept it and follow the program and report to them that you improved, they will praise you with a big smile and count you as a success.

Anyone who asks them how often they have a patient who follows their guidelines and does everything right and does not improve. My guess is they would say basically 0%, which is how you know it's probably not science. As soon as an intervention approaches 100% efficacy, you are most likely dealing with religion, not science.

Confirmation bias

I'm truly sorry @Alvin2 that you are going through all this. I'd never even heard of FND until reading this thread. As an aside, you mentioned feeling dizzy/spacey when you raised your arms. That can potentially be a sign of autonomic issues. Autonomic problems aren't always immediately obvious so it's maybe something else to rule out if you haven't done so already.

Thanks

It actually does not bother me, i am more concerned about other ME/CFS patients who they will permanently harm. If i were not this severe i would consider filing an official complaint with the medical authority and seeing if i can get this quashed as medical malpractice.

You just described the last visit to my cardiologist, one I previously trusted without question. My response was similar to yours.

What changed was I now wanted to discuss root causes of my arrhythmia, and was conversant about some of the possibilities and the physiology and biochemistry involved. Paving over the problem was/ is no longer an option.

Sorry to hear about this.

I have a similar predicament, i need a hormone replacement that i have to take daily, when i asked the endocrinologist why i have this deficiency he said its not well understood but the treatments does treat it.

He said the best theory is it is because your body is shutting down (due to ME/CFS). And he had explained that under severe physiological stresses these types of hormone deficiencies do happen to men and women. He explained that women can miss periods, lose pregnancies and more due to chronic stress. The mechanism is not yet understood but that it does happen is well documented.

So while ME/CFS is not a proven cause of low hormone levels and of course not provable in me, he said it does happen and is the best explanation we have so far.

And i can live with this, he tries his best and he even understands that ME/CFS is a crippling condition that is real even if we do not yet understand its etiology.

 

[Alvin2]

I wonder if some of their "FND" patients are misdiagnosed patients with POTS alone or misdiagnosed Ehlos Danlos with no ME/CFS.

I am in a few groups of POTS patients and Ehlos Danlos patients.

Given that they tested me for Parkinsons they are most certainly using GET on people who have half a dozen or more different conditions.
I an see them getting people with

• ME/CFS
• Depression
• EDS
• Pots
• Seizures
• Sleep Apnea
• Osteoporosis
• Injuries/intractable pain
• Brain tumours
• Brain injury
• Workplace accidents
• Parkinsons
• Fibromyalgia
• MS
• ...and more

I tried special Ehlos Danlos physiotherapy.
It did improve the pain at the beginning, but I keep crashing energy-wise. So I stopped. They are all fine on it.
PEM and exercise intolerance is such a massive symptom.

Damn, that sounds terrible.

I'm guessing FND and GET are the modern day equivalent to hysteria and blood-letting with leeches...

Pretty much, Its the new Hysteria since that was discredited so long ago.

It's really sad. Misdiagnosis is the easiest way to ignore CFS indefinitely, especially when they can't differentiate between CFS and depression. When their therapies don't work they blame it on the patients, very convenient and no one can prove they're wrong. If they mix non CFS with CFS patients because there's no real test to tell who has what, GET will always receive credit for helping 'CFS' patients.

Yup.

They should have learned something after Alzheimer to not to gaslit people with new and not well known symptoms, but that would work in a world where doctors help us. What they do instead is they protect the business and don't care about the patients. Patients with diseases that no one knows how to treat are inconvenient, so the easiest way is to exclude them to not to bother anyone or include them in the paying system by giving them some mental diagnosis, best if it requires pharmacotherapy, and this additionally makes pursuing real diagnosis much more difficult so it makes their life easier.

I got the feeling that they mean well but they were taught this discredited basket of lies in medical school and do not have the capacity to evolve beyond it.

They should have learned something after Alzheimer

I am unfamiliar with this situation, can you elaborate?

 

[Alvin2]

As an aside, you mentioned feeling dizzy/spacey when you raised your arms. That can potentially be a sign of autonomic issues. Autonomic problems aren't always immediately obvious so it's maybe something else to rule out if you haven't done so already.

I likely have POTS but at a much lower severity than most ME/CFS patients. When i get up i can feel faint, and there are a few other issues But they are not a big deal, they are just normal to me and not at a severe level.
When i am near the PEM threshold i have more issues with energy expenditure which is how this was an issue, this clinic is 3 cities away, i got there and to the appointment but i am mostly mostly housebound, i was already near my limits. Adding their battery of cognitive and physical tests was too much. They wanted me to jog in the hallway to test my gait, i refused.

I find it interesting how they cherry pick symptoms and claim it "proves" my condition is psychosomatic. They are lying and think they are justified in doing so. Frankly that is patient abuse imo.

 

[Judee]

I'm sorry, I haven't been keeping up with the thread. Have you had a Tilt Table Test?

 

[Alvin2]

I'm sorry, I haven't been keeping up with the thread. Have you had a Tilt Table Test?

Nope.

 

[Judee]

Then how can he definitely say you have FND? Dopey doctor.

 

[Alvin2]

Then how can he definitely say you have FND? Dopey doctor.

Because i pushed down with one leg while pushing up with the other (for leverage) and that i get dizzy when tired and lifting my hands over my head. And i refused to jog in the hallway.
And that i only have multiple white matter lesions on my brain MRI and not anything else that indicates a physical condition.

Besides, they have innumerable examples of curing people with ME/CFS

 

[Judee]

Okay so he's not just dopey, but loony tunes also.

 

[Alvin2]

Okay so he's not just dopey, but loony tunes also.

His suggested treatments would work about as well as all that stuff from Acme that Wile E Coyote uses.
However these neurologists are no super geniuses.

I am reminded of this meme:

 

[Hopesprings86]

I likely have POTS but at a much lower severity than most ME/CFS patients. When i get up i can feel faint, and there are a few other issues But they are not a big deal, they are just normal to me and not at a severe level.
When i am near the PEM threshold i have more issues with energy expenditure which is how this was an issue, this clinic is 3 cities away, i got there and to the appointment but i am mostly mostly housebound, i was already near my limits. Adding their battery of cognitive and physical tests was too much. They wanted me to jog in the hallway to test my gait, i refused.

I find it interesting how they cherry pick symptoms and claim it "proves" my condition is psychosomatic. They are lying and think they are justified in doing so. Frankly that is patient abuse imo.

Any degree of pots is potentially significant. Why do I say this? Because I have had pots and fatigue for 20 plus years and am now in remission, only thanks to correcting a b vitamin deficiency. I'm now having to come to terms with the fact I have lost what should have been the best years of my life to an easily corrected nutritional deficiency. I'm furious. I've been unwell since the age of 13. I'm now 37. If I hadn't done my own research I'd have been sick forever.

At a minimum ask for testing to confirm you have pots as it is easily measured and will blow all this FND nonsense out of the water. Your nuerologists are at best incompetent and at worst extremely dangerous. You deserve better.

 

[Alvin2]

Any degree of pots is potentially significant. Why do I say this? Because I have had pots and fatigue for 20 plus years and am now in remission, only thanks to correcting a b vitamin deficiency. I'm now having to come to terms with the fact I have lost what should have been the best years of my life to an easily corrected nutritional deficiency. I'm furious. I've been unwell since the age of 13. I'm now 37. If I hadn't done my own research I'd have been sick forever.

I'm so sorry to hear that 😭

In my case i have tried all the common nutrients and they had no effect beyond correcting deficiency (i had a B12 deficiency) and folic acid reduces my headache severity.
Do check out my Everything I have tried thread and if there is anything i have missed let me know and i will try it.

That all said this is my biggest fear, while ME/CFS may have no treatment if i have something else that is treatable i am losing time and would be starting from scratch if we get an ME/CFS treatment and it turns out i as misdiagnosed all along and had something treatable all along.

At a minimum ask for testing to confirm you have pots as it is easily measured and will blow all this FND nonsense out of the water. Your nuerologists are at best incompetent and at worst extremely dangerous. You deserve better.

I seem to have hit the end of what testing i can get in my province of Canada. Not sure who to see for POTS and i would like to get a referral to a hematologist to address my borderline low MCH and MCV. Genetic testing is almost impossible to access, spent years trying. I am now on a waiting list of another couple years expected.

The FND wackos have limited ability to harm me, i cannot be locked up against my will unless i am a danger to myself or others and that's not an issue. I won't be trying their nonsense treatments since i know better. I would put in an official complaint for medical malpractice if i had the spoons to see that through, but i do not.

That all said i continue to look for other avenues to explore and i have a half dozen things on my list to try, i am hoping TUDCA might be a good one (i already have it, its on the testing list).

 

[Hopesprings86]

I'm so sorry to hear that 😭

In my case i have tried all the common nutrients and they had no effect beyond correcting deficiency (i had a B12 deficiency) and folic acid reduces my headache severity.
Do check out my Everything I have tried thread and if there is anything i have missed let me know and i will try it.

That all said this is my biggest fear, while ME/CFS may have no treatment if i have something else that is treatable i am losing time and would be starting from scratch if we get an ME/CFS treatment and it turns out i as misdiagnosed all along and had something treatable all along.


I seem to have hit the end of what testing i can get in my province of Canada. Not sure who to see for POTS and i would like to get a referral to a hematologist to address my borderline low MCH and MCV. Genetic testing is almost impossible to access, spent years trying. I am now on a waiting list of another couple years expected.

The FND wackos have limited ability to harm me, i cannot be locked up against my will unless i am a danger to myself or others and that's not an issue. I won't be trying their nonsense treatments since i know better. I would put in an official complaint for medical malpractice if i had the spoons to see that through, but i do not.

That all said i continue to look for other avenues to explore and i have a half dozen things on my list to try, i am hoping TUDCA might be a good one (i already have it, its on the testing list).

Hi @Alvin2 may I send you a private message?

 

[Alvin2]

Hi @Alvin2 may I send you a private message?

Of course

 

[Alvin2]

I had a sleep neurologist appointment yesterday, went fine, was just a followup. While there is no new treatment to try the neurologist made me laugh by observing that everything else with your medical conditions is falling apart but your sleep pattern seems to be the most stable part of your medical issues.

While he has no idea how to treat ME/CFS and doesn't comment on anything outside his discipline he was very validating about it, even after reading the other ridiculous neurologist note that says i have somatic symptom disorder.

He did offer to do a comprehensive workup on me if they get funding at their new sleep centre next year.
I did mention the vasopressin but he was not enthusiastic to try it, though i will try my GP. I did put the idea in his head and i find this neurologist is pretty open minded (even accepting my unconventional calcium finding) so i will ask about it explicitly next time if i need to.

Other appointment the day before they gave me a medication used for nausea in chemotherapy patients. Will be interesting if its covered by my drug plan to see what it does.

Hi @Alvin2 may I send you a private message?

I got your message and am recovering form two appointments in two days but do intend to reply to you.

 

[Zebra]

Hi, @Alvin2

I've been following this thread and appreciating your updates. I am always looking to learn from others and try to contribute when I can.

Curiosity sparked me to look up "functional neurological disorder" and I chose to read the the U.S. National Institute of Health write up on the condition. I've read it through twice, and my interpretation is that they now consider FND to be a disease originating from the brain, and not necessarily psychological.

I will provide the URL below, if anyone is curious, but here's a passage from the end of the write up:

"Scientists funded by the NIH are working to better understand the underlying neuropathology of FND and are using magnetic resonance imaging to develop neuroimaging biomarkers—signs that may indicate risk of developing a disease or be used to monitor its progression—for FND and nonepileptic seizures. Among other research, investigators hope to develop a test to diagnose and better treat PNES and to test medications for PNES."

To be clear, I am NOT saying that FND is a legit diagnosis. Nor am I implying that you have FND. Not at all!

I just found the NIH write up interesting, and I thought you might, too, especially since the diagnosis requires a battery of tests that were NOT administered at that clinic you went to.

Personally, I think "Functional Neurological Disorder" is a Garbage Pail diagnosis used by lazy or less skilled neurologists.

I am blessed in that even though my initial neurology testing (MRIs, NCS/EMG, skin punch bx, etc) we're all normal at the onset of me contracting ME, my neurologist was willing to keep me as a patient and wait for my illness to declare itself. Now I've got a bunch of positive results that give my symptoms some legitimacy in the medical community, but I still lack a unifying diagnosis that could lead to treatment.

Here's the NIH write up on FND for anyone interested:

https://www.ninds.nih.gov/health-information/disorders/functional-neurologic-disorder

 

[Alvin2]

I've been following this thread and appreciating your updates. I am always looking to learn from others and try to contribute when I can.

Thanks

Curiosity sparked me to look up "functional neurological disorder" and I chose to read the the U.S. National Institute of Health write up on the condition. I've read it through twice, and my interpretation is that they now consider FND to be a disease originating from the brain, and not necessarily psychological.

I will provide the URL below, if anyone is curious, but here's a passage from the end of the write up:

"Scientists funded by the NIH are working to better understand the underlying neuropathology of FND and are using magnetic resonance imaging to develop neuroimaging biomarkers—signs that may indicate risk of developing a disease or be used to monitor its progression—for FND and nonepileptic seizures. Among other research, investigators hope to develop a test to diagnose and better treat PNES and to test medications for PNES."

To be clear, I am NOT saying that FND is a legit diagnosis. Nor am I implying that you have FND. Not at all!

I just found the NIH write up interesting, and I thought you might, too, especially since the diagnosis requires a battery of tests that were NOT administered at that clinic you went to.

Personally, I think "Functional Neurological Disorder" is a Garbage Pail diagnosis used by lazy or less skilled neurologists.

I am blessed in that even though my initial neurology testing (MRIs, NCS/EMG, skin punch bx, etc) we're all normal at the onset of me contracting ME, my neurologist was willing to keep me as a patient and wait for my illness to declare itself. Now I've got a bunch of positive results that give my symptoms some legitimacy in the medical community, but I still lack a unifying diagnosis that could lead to treatment.

Here's the NIH write up on FND for anyone interested:

https://www.ninds.nih.gov/health-information/disorders/functional-neurologic-disorder

Unfortunately FND is Hysteria with a new name and a boatload of pseudo scientific rationalizations.
They need to make their house of cards sound plausible thus they have invented a "new paradigm" to give it legitimacy.

BTW that "legitimate" FND website they frequently quote was created by a student of Michael Sharpe who we know well as one of the "researchers" from the fraudulent PACE study.

 

[Zebra]

Hi, @Alvin2,

Like I said in my post, I think FND is a waste basket diagnosis that neurologist's assign to patients when they don't know what's wrong with a patient and lack the intellectual humility or skill to properly diagnose them.

So, in case it wasn't clear in my post, I agree with you, that FND is neurologist's modern-day equivalent of hysteria.

 

[Zebra]

BTW that "legitimate" FND website they frequently quote was created by a student of Michael Sharpe who we know well as one of the "researchers" from the fraudulent PACE study.

BTW: I didn't see that referenced anywhere in the NIH write up.