I have more sense than a team of Neurologists

[pattismith]

It is surprising how simplistic psychological medicine is.
That said they actually believe they are giving proper medical care, not terminating it.

I'm afraid i don't know what type of arthritis.

it would be interesting to know, because some seronegative and seropositive arthritis patients can have concomittant white matter lesions that may benefit from the arthritis treatment.

The neuropsychiatric symptoms that often go with arthritis are not necessarily correlated in severity to the disease activity, so you can have low level arthritis and higher severity of the neuropsychiatric side.

Here an example of white matter lesions in rheumatic arthritis

Results: Of the 54 participants who attended both visits (76% female, mean age 55.2 years, mean
disease duration 11.35 months at baseline), 22 (40.7%) reported a clinical
improvement in fatigue at 6 months (mean 2.64 point reduction in CFS) and 32
(60.3%) reported unchanged fatigue (-0.13 change in CFS).
Within the fatigue improver group, statistically significantly reduced FA levels were observed at
visit 2 compared to visit 1.
The regions of change were diffuse, but much greater in the right hemisphere and
specifically the periventricular, internal capsule, thalamus, inferior frontal
and parietal areas (figure). ...

In contrast, no significant differences in FA levels were observed between visits within the fatigue non-improver group.

Conclusion: The striking disparity in white matter integrity changes between the fatigue improver
and non-improver groups provides preliminary evidence to support the role of DTI as a future biomarker of RA related fatigue.

https://acrabstracts.org/abstract/b...ker-for-rheumatoid-arthritis-related-fatigue/

 

[Alvin2]

And I'll put in one more plug for muscle testing

What is muscle testing?

I won't go to a doctor unless I know what it is I want them to do

If i knew that i would not be going to the doctor. I saw a rheumatologist late last year who ran tests i had never heard of, i could never have known to ask for them.
Same with the mitochondrial diseases doctor, i did not know what tests they do, but they did them and i now know i don't have muscular dystrophy or mysthenia gravis.

it would be interesting to know, because some seronegative and seropositive arthritis patients can have concomittant white matter lesions that may benefit from the arthritis treatment.

I don't know if i can get my hands on 25 year old medical records for someone who is deceased.

 

[hapl808]

Same with the mitochondrial diseases doctor, i did not know what tests they do, but they did them and i now know i don't have muscular dystrophy or mysthenia gravis.

And even here, you have to be careful. They will tell you what you don't have, then later you will find there is no definitive test, so it's their judgment, not a definitive lab result. I had this with MS where each neuro I saw initially thought MS, then did some tests and said I don't have that. My guess (with more understanding), is that a few neuro physical exam items (like Babinski) don't react as typical MS, but my understanding is that none of those things are definitive. None ordered an MRI, yet here I am years later and I still cannot stand or walk without assistance.

In the end, many of these diseases have relatively definitively positive diagnostic markers, but not negative ones. If you have certain antibodies, then you might get an MG diagnosis. If you don't have those antibodies, that doesn't mean you definitely don't have MG.

Obviously, I'm not a neuro and this is just my impressions. Then again, I'm shocked with how little neuros seem to know outside of their two or three specialties, and even then they only treat the typical presentations.

 

[Mary]

What is muscle testing?

Here's one link, there's tons more info on-line. It's also often called applied kinesiology: https://www.icakusa.com/

In my experience it's most often done by chiropractors, though I'm seeing an osteopath right now who does it.

If i knew that i would not be going to the doctor. I saw a rheumatologist late last year who ran tests i had never heard of, i could never have known to ask for them.
Same with the mitochondrial diseases doctor, i did not know what tests they do, but they did them and i now know i don't have muscular dystrophy or mysthenia gravis.

I'm glad you have doctors who take you seriously and know more than you do. That's often rare. I've pretty much given up on doctors but once in awhile am surprised by being taken seriously. 6 or 7 years ago I had one endocrinologist tell me that ME/CFS didn't exist, he wouldn't look at the research I brought because ME/CFS wasn't real and that there never would be any research about it because, it wasn't real. I also had another endo who was "nice" (and I had to pay out of pocket for him), and he nicely suggested I try GET even after I explained what PEM was. He didn't ridicule me directly, just gently suggested I give it a try, as though every day of my life was not an exercise in doing as much as I can without triggering a crash.

 

[Alvin2]

And even here, you have to be careful.

Oh i know, nothing in life is guaranteed. However the chances of this being correct are probably in the 99% range.
One can't get bogged down in maybes because that prevents any progress at all.
I also have a great deal of experience dealing with doctors. I have been able to get things done for others who were going nowhere until i went with them to their appointments and worked their doctors or got them better doctors.

Here's one link, there's tons more info on-line.

I had an electrode muscle test by one of the top docs in Canada in this area, being zapped and zapped by a needle with computer readings on both.That said i have an amazing chiropractor and she is able to manage the pain so i don't need hardcore painkillers but the rest of it is above her pay grade. However she does not dismiss ME/CFS in the slightest.

 

[Alvin2]

I'm glad you have doctors who take you seriously and know more than you do. That's often rare.

Thanks and it is rare. I know when to cut a doctor loose, i've learned you cannot teach an old doctor who does not want to learn new tricks. You also can't teach a young doctor new tricks.
Once they demonstrate they are useless you must move on.
Its a numbers game, see enough and you find the good ones. But you have to pound the pavement, which was much easier before i was mostly housebound.

There is the odd doctor willing to learn, for them i gave them ME/CFS literature. You can figure out quickly who they are, in the first appointment usually.

I've pretty much given up on doctors but once in awhile am surprised by being taken seriously.

Indeed. I am dealing with a nonsense neurologist right now, i will be cutting her loose.

 

[Alvin2]

They didn't upload my medical records to the online portal so i requested them from the records department. I wonder if the not uploading was intentional, but i know how to work the system and get them anyways.

They have diagnosed me with Somatic Symptom Disorder.
And they complain that i don't accept that nor take their coveted SSRIs

Time to move on, just want to make sure i get the depression counselling they referred me for.

 

[Alvin2]

This clinic called me yesterday and said this is a reminder of your appointment tomorrow. I was like what appointment, i didn't make one.
Oh we sent you the info in the fall. Spoiler: they did not.

So okay, i would be awake (they got lucky considering my non 24) and it was virtual.

So the resident once again hyped up FND. I thought i'd have some fun so i asked him what is ME/CFS. I got some wishy washy answer so i asked what is the difference between ME/CFS and FND?

Took some prodding but it turns out he believes it is separate from FND yet also is FND. And of course the treatment is CBT/GET and it is critical to believe in the diagnosis, as the only path to getting better.

What i find interesting is the contradictory logic, it is both simultaneously the same and different diseases.

So they are terminating me as a patient until i am ready to accept their lies

 

[Mary]

@Alvin2 - that's horrible! Not that they're terminating you as a patient, but just the nonsense spouted by that "doctor". It's not surprising I guess but it's still awful. I've been seeing an osteopath who actually believes ME/CFS is real and knows a little about it, about as much as anyone can know, so have been a bit spoiled that last year and a half.

I hope you get your depression counseling (I think!) though it might just be more nonsense . . .

 

[Alvin2]

@Alvin2 - that's horrible! Not that they're terminating you as a patient, but just the nonsense spouted by that "doctor". It's not surprising I guess but it's still awful. I've been seeing an osteopath who actually believes ME/CFS is real and knows a little about it, about as much as anyone can know, so have been a bit spoiled that last year and a half.

I hope you get your depression counseling (I think!) though it might just be more nonsense . . .

Thanks

I'm actually laughing. What i find interesting is the cognitive distortions they have to go trough to justify their nonsense. It is an interesting human flaw that when we are married to an ideology many cannot see past it even when they are in a field that by definition advances over time.

They are not a religion with rock solid tenets, they are researchers who went into a field to advance science.
I want to write an article about this, we shall see if my cognition will handle it.

 

[Alvin2]

These guys referred me for physio therapy, i have an appointment next week.

It appears they might be a graded exercise clinic 😲
https://www.uhn.ca/Krembil/Clinics/Movement_Disorders
Their intake form asks how confident are you that you have FMD and how much do you believe you will improve.

I had no idea this kind of abomination existed in Canada 🤯

While i might be reading too much into that and the rest of the form i am certainly on guard when i go to he appointment on the 15th. Fortunately being Canada they have no legal standing to force me accept any treatment or lock me up.

 

[Alvin2]

Anyone have access to Uptodate and can grab the ME/CFS entry so i can check it out, (its pay walled) i have that physio appointment this week, if it devolves to arguing i want to have some ammunition.

 

[Alvin2]

Yup they tried to sell me on GET

I will post more tomorrow when I have recovered from going to the appointment

 

[L'engle]

Yup they tried to sell me on GET

I will post more tomorrow when I have recovered from going to the appointment

 

[Alvin2]

So i went to the appointment and it was with the same neurologist i had the last appointment with, i did not know it would be the same person as i was dealing with a brain clinic and this is a physiotherapy centre.

Of course he wanted to know if i accepted i have FND and that his treatment would solve it. I was asked if i accept i have FND about a half dozen times throughout the hour plus appointment. I hedged and gave open ended answers which he did not like but had to accept. Then he did essentially a stripped Parkinsons testing package on me, which i passed since i don't have Parkinsons. Though the fact i got spacey (dizzy) raising my hands above my head (stretched out) and the fact i pushed down with one foot when pushing up on the other during a strength test lying down "proves" i have FND. I do wonder if these nitwits are taught to choose a couple random ME weakness compensations and claim it is "evidence" of FND.

Then another neurologist came in and said she is an FND expert and that i am expected to believe i have FND in order for treatment to succeed. And she claimed that FND is the second most common neurological disorder 🤣

They want to do slowly escalating exercise therapy. They seemed to know about ME/CFS symptoms so they are experienced in harming patients. The words Graded Exercise Therapy was mentioned once as was the FND website several times (which was created by a student of Michael Sharpe).
They claim to have a high success rate in treating ME/CFS.

She was more tactful and less pushy than the first guy but i was reminded of the 48th Rule of Acquisition (Star Trek fans will know this) - The bigger the smile, the sharper the knife.

They were "understanding" and "kind", and they sincerely believe in the medical malpractice they are peddling. And were sensitive to my mostly housebound level, that they do not recommend the level of GET they normally use, they suggest i start slower. And they seemed to peddle a lot of the software and hardware of the brain tripe. There was no overt jerkiness or threats of any kind, just attempted emotional convincing. It was almost cultish.

And they have some intuitive understanding that not everyone will accept their "treatment", as they put it they only want to treat people who accept they have FND and left it up to me to make a followup appointment if i am interested. Which of course won't be happening

What i find interesting is that they have any success rate at all. I would be very interested in deep diving into interviewing their patients. The tests they did are not specific for ME and they seem to treat FND no matter who they think has it, not just ME patients. They did not use the Canadian Consensus Criteria or any ME criteria at all. If they are having successes with patients then either the patients do not have ME (they may have depression or nothing at all) or their ME and non ME patients just tell them what they want to hear and stop attending for more treatment. Or maybe they just ignore patients who get worse thus they have a high success rate, if you drop the failures form your data then you have only success?

I did not try to educate them that they are pedalling discredited garbage, they are so far into their "religious" beliefs that it would be a waste of my energy (they have probably been doing GET for years). I might as well be telling these flat Earthers that the Earth is round.

 

[Alvin2]

They seemed a bit bothered about my non 24 hour circadian rhythm disorder diagnosis, i got the impression they wanted to claim it is also a symptom of FND but since a neurologist diagnosed it my guess is they thought they could not get away with that.

I might be wrong on this but it is a strong feeling.

 

[hapl808]

Or maybe they just ignore patients who get worse thus they have a high success rate, if you drop the failures form your data then you have only success?

This is my guess.

It's a perfect cult.

If you do not accept you have FND and follow their program, then you don't count.

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.

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.

 

[Hopesprings86]

Honestly believe that sadly some doctors go into medicine for all the wrong reasons. Seems like they are missing human empathy at the very least.

One previous heart rhythm specialist I saw angrily told me it was "academic" when I asked him to find the cause of my autonomic dysfunction. He wasn't interested in looking for causes or cures, he was only interested in prescribing dangerous medications to suppress symptoms. When I told him I personally felt uncomfortable with the idea of symptom management without any acknowledgement of the root cause of the issues, he patronising told me "I didn't understand the condition". I beg to differ, it is in my opinion unethical to hand out life altering medications without fully investigating what is happening. That was my last appointment with that doctor. I didn't bother to go back.

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.

 

[almost]

One previous heart rhythm specialist I saw angrily told me it was "academic" when I asked him to find the cause of my autonomic dysfunction. He wasn't interested in looking for causes or cures, he was only interested in prescribing dangerous medications to suppress symptoms. When I told him I personally felt uncomfortable with the idea of symptom management without any acknowledgement of the root cause of the issues, he patronising told me "I didn't understand the condition". I beg to differ, it is in my opinion unethical to hand out life altering medications without fully investigating what is happening.

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.

 

[Insomniac]

Then another neurologist came in and said she is an FND expert and that i am expected to believe i have FND in order for treatment to succeed. And she claimed that FND is the second most common neurological disorder 🤣

They want to do slowly escalating exercise therapy. They seemed to know about ME/CFS symptoms so they are experienced in harming patients. The words Graded Exercise Therapy was mentioned once as was the FND website several times (which was created by a student of Michael Sharpe).
They claim to have a high success rate in treating ME/CFS....

....They were "understanding" and "kind", and they sincerely believe in the medical malpractice they are peddling. And were sensitive to my mostly housebound level, that they do not recommend the level of GET they normally use,...

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.

Many of them have neurological symptoms similar to CFS but without PEM. They are all improving on graded exercise started at a lower threshold and done more gradually..
They don't get PEM

I feel like a freak with them.

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.