I have more sense than a team of Neurologists

[Alvin2]

Had a virtual appointment with a highly regarded clinic, explained my cognitive issues from inability to sort things to working memory issues to fluid thinking problems to inability to do math or watch TV or read books and all the rest of it.

The diagnosis. Depression and FND

I swear that i should be the neurologist and them the patients.

 

[Rufous McKinney]

The diagnosis. Depression and FND

OMGOSH these people. How absolutely ridiculous.

One sheep in the presence of the rest of the flock, all the sheep lose their minds?

Baaaaaaa

(apologies to sheep, an intelligent animal)

maybe you actually need a rheumatologist (?)

 

[Rufous McKinney]

Depression and FND

I think this is simply the primary way that group think, and they put everyone into this single box. (most everyone)

And then because its a group of them, instead of innovative thinking your get even worse Group Think. I am thinking a group of them night be even more inflexible, the exact opposite of what you thought would be the possible outcome.

 

[hapl808]

This will likely continue until you are seeing doctors who were born around 2000 and went through medical school in the long Covid era where people started thinking of 'brain fog' as a real symptom. Doctors who went through medical school when FND was the diagnosis will likely never learn to change unless they actually come down with long Covid or ME/CFS.

I do think it's truly funny that when physicians themselves are experiencing it, suddenly N=1 makes it real. I've never once talked to a physician who had ME/CFS or long Covid and told me, "Yeah, it's crazy that I developed FND after diagnosing other people with it." Even when they themselves got the diagnosis, they knew it was ridiculous. Instead they're trumpeting how real it is, how debilitating, etc. Oh really? So when it happens to you it matters. Funny how that works.

 

[Rufous McKinney]

Funny how that works.

HARDEE HAR HAR

 

[wabi-sabi]

They even do it to each other:

https://www.medpagetoday.com/opinion/second-opinions/102084

 

[Gingergrrl]

The diagnosis. Depression and FND

That is so annoying! I was really hoping that this Neuro appt would turn out to be helpful for you although my overall faith in neurologists is very low!

 

[Nord Wolf]

The diagnosis. Depression and FND

I swear that i should be the neurologist and them the patients.

Speechless, but not surprised at all considering my many disappointments and observations of downright criminal behavior by the western medical profession this year concerning my own medical pursuits. I have a telahealth consult with one of my neurologists this coming Monday... we shall see what gems of wisdom they convey.

 

[Rufous McKinney]

neurologists

do neurologists deal with neuropathy?

many of us have Small Fiber Neuropathy (Dr. Systrom said 45%)

so thats FND?

 

[wabi-sabi]

so thats FND?

Yep. Caused by a lack of positive thinking and can be cured with CBT!

 

[heapsreal]

I will say most people with a chronic illness are prone to depression, who wouldn't. But it's a secondary effect of the illness.

 

[hapl808]

I will say most people with a chronic illness are prone to depression, who wouldn't. But it's a secondary effect of the illness.

Yes, this is how they frame their minimizing studies. "Oh, people who had anxiety were more likely to be affected by mild activity." Or whatever.

Like, people with diabetes might be more anxious than a non-diabetic person about chugging a 2L bottle of Coke. This doesn't mean that a diabetic crisis is the result of anxiety because non-anxious people don't get those diabetic reactions; it means from experience the diabetic knows how sugar will affect them before they ingest it.

It's funny that such a simple concept is elided in the pursuit of the almighty 'mental health' (add reverb) diagnosis at the expense of any other explanation.

 

[Tammy]

do neurologists deal with neuropathy?

All they can really do is suggest Gabapentin like many Dr.'s do.

 

[Alvin2]

Catching up on replies:

maybe you actually need a rheumatologist (?)

Got myself referred to one, he doesn't think i have a rheumatological issue, but did run a bunch of blood tests of things i have never heard of, all negative. Good in a way but also frustrating in another way.

I think this is simply the primary way that group think, and they put everyone into this single box. (most everyone)

Indeed, they are used to tick off the box and shoehorn everyone into what they regularly see.
And the anchoring bias.

And then because its a group of them, instead of innovative thinking your get even worse Group Think. I am thinking a group of them night be even more inflexible, the exact opposite of what you thought would be the possible outcome.

Indeed, often its you see one, you have seen them all

This will likely continue until you are seeing doctors who were born around 2000 and went through medical school in the long Covid era where people started thinking of 'brain fog' as a real symptom. Doctors who went through medical school when FND was the diagnosis will likely never learn to change unless they actually come down with long Covid or ME/CFS.

The irony is this is a young guy. I actually thought he was a resident and i asked when the neurologist is coming onto the call!
Has to be late 20s to early 30s.

I do think it's truly funny that when physicians themselves are experiencing it, suddenly N=1 makes it real.

Indeed. It seems they need to learn the hard way.

They even do it to each other:

https://www.medpagetoday.com/opinion/second-opinions/102084

Jesus. Thanks for posting this, its bookmarked for when i get to writing that article for my website.

That is so annoying! I was really hoping that this Neuro appt would turn out to be helpful for you although my overall faith in neurologists is very low!

It is incredibly annoying. The worst part is that they have no introspective ability whatsoever. I could tell them the meaning of life and it goes in one ear and out the other.

Yep. Caused by a lack of positive thinking and can be cured with CBT!

This was his suggestion., He gave me a bunch of online CBT recommendations.
When he mentioned FND i didn't recognize it in the moment so he linked an online graphic with an "explanation".
My reply: This is a wastebasket diagnosis.
Him: Give it a chance.

His recommendations is counselling, antidepressants and CBT.
And exercise.

He didn't understand ME/CFS that well but was aware of it. I understand that CFS makes it hard to perform physical activity but start very slow and increase slowly to get to the maximum that you can manage.
The CBT is not to cure the CFS according to him, but to make the depression go away and that will make the cognitive problems go away by treating the FND.

When i tried to explain that depressed people are physically capable to watch TV or read articles or wash dishes he could not understand that my cognitive issues are far more severe than can be explain by depression.

What i find interesting is that they never question anything, their own training or the nonsense they are spoonfed. When i pointed out that every disease or medical conditions has a specific etiology, that concept could not pierce his inability to use logic.

I will say most people with a chronic illness are prone to depression, who wouldn't. But it's a secondary effect of the illness.

Pretty much. I didn't go into the rabbit hole of if he considers it "biological" or situational, doesn't really matter much to me.

All they can really do is suggest Gabapentin like many Dr.'s do.

I requested and tried Pregabalin, no effect

 

[Alvin2]

Oh and the neurologist talked about hardware and software of the brain, must be some kind of new paradigm they are peddling.
More easy answers

 

[lenora]

I think we can expect this type of answer (like it or not...and of course we don't) until we're actually able to prove there is an "illness."

I'm old enough (75) to have seen this with many illnesses, the primary one being MS. Those people suffered for years and were told, as we often are (but not always) that "it's all their minds." Finally, the cause was actually found and it became a disease, thus something was able to be taught in medical school.

It has been a long time, I fully agree, but I can now say in all honesty that it was only 30+ years that the MRI was developed and it has changed the way many illnesses, including ours, is often perceived.

I know that 30+ years must seem a very long time for many of you, but I can assure you that progress that we never imagined has been made. Right now we're not a disease, but a Syndrome...a collection of symptoms. We'll someday be considered a disease.

Even research is all over the place, but at least there is more (yes, unbelievable as it may seem) interest in the illness today. We have good researchers, but we need more money...not just from the govt., but from our own community. $5 is $5 added to the pot, the amount doesn't matter, no one knows. If some of you can afford to give larger donations, please do so.

Many things have been tried, but until research proves the existence of an illness (and personally, I feel there is more than one cause...look at us and our many different symptoms) not much will happen. Read what you can, try to convey your multiple symptoms and hope...because that has been what has kept me going for these past years.

I have long given up hope that there will be a difference for me....but I'm sincerely hopeful that many of you will be helped and someday these symptoms will be readily recognized. Look to the future....it matters. Lenora

 

[wabi-sabi]

Oh and the neurologist talked about hardware and software of the brain,

This is the part that shows the nonsense most. Brains are complex, so we try to analogize them to our most advanced type of technology.

But, when you talk about hardware and software, you are talking about brain and mind. If the mind is immaterial, then FNDs can exist i.e. the software can malfunction without the hardware going wrong. But if the mind is material (a function of the brain) then it cannot malfunction without there being a brain problem. Therefore FND can't exist.

 

[Husband of]

We got a letter back from the neurologist pointing us to recoverynorway. I never told my wife.

 

[Rufous McKinney]

I understand that CFS makes it hard to perform physical activity but start very slow and increase slowly to get to the maximum that you can manage.

thats just what most of us do every day. Surviving demands more than most of us can deliver. We do as much as we possibly can because we have little choice.

The garbage will not leave, unless I take it out.

Hair will be dirty, unless its gets washed.

Food has to be prepared, if you lucky enough to have found a way to have food supplies.

The dishes are dirty. Either I stand here and wash them, or I stand here and rinse them, then put them away.

so the day arises that you do 6 things instead of 4 things and our little car crashes into the ditch.

 

[Rufous McKinney]

recoverynorway. I never told my wife.

I'd send a sympathy card, if I could....