• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

I have more sense than a team of Neurologists

pattismith

Senior Member
Messages
3,926
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

The good news is patients don't die the bad news..
Messages
2,938
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

Senior Member
Messages
1,997
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

Moderator Resource
Messages
17,285
Location
Southern California
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

The good news is patients don't die the bad news..
Messages
2,938
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

The good news is patients don't die the bad news..
Messages
2,938
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.
 
Last edited:

Alvin2

The good news is patients don't die the bad news..
Messages
2,938
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. :woot: :woot: :woot:
And they complain that i don't accept that nor take their coveted SSRIs :xeyes:

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

Alvin2

The good news is patients don't die the bad news..
Messages
2,938
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 :woot:
 

Mary

Moderator Resource
Messages
17,285
Location
Southern California
@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

The good news is patients don't die the bad news..
Messages
2,938
@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 :hug:

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.