The ruling out of other conditions: do you think you've had adequate ruling out of other conditions?

StellariaGraminea

StellariaGraminea

Established Member (Voting Rights)
I've had a handful of blood tests and a clinical case history taken (by GP, later by Infectious Diseases). (Editing to add: and neither were familiar with post viral conditions.) Going on the report of the latter, didn't listen to much that I said, and time was short. I personally don't consider I've had any adequate "ruling out" of other conditions, and have just been left on the coal scrap heap with no one medical seemingly concerned at all that I've been taken from being a "productive" member of society & cut out of normal life.

I know a lot of Drs don't take this illness seriously, but I find it hard to see how they justify the lack of curiosity and the barely there investigations considering the severity of the impact on people's lives.

Wondering do many feel like they've had adequate investigations to rule out other possible conditions?
 
I've had over 20 years of clinicians and researchers investigating with blood tests and MRIs and PET scans and urine tests and cardio exams and neuropych exams etc etc. Some were done in earnest. Some were just going through the motions.

I can say unequivocally that none of them were adequate because many of the diseases and conditions they were either trying to rule in or out were tested with embarrassingly poor tests not fit to be in use.

Moreover, I cannot think of one experience where all the possible conditions were explored. Not one. That includes the NIH and a few major research universities, as well as a bevy of solidly credentialled infectious disease doctors and ME/CFS experts. And Rheumatologists. And endos. The list drags on.
 
duncan said:
I've had over 20 years of clinicians and researchers investigating with blood tests and MRIs and PET scans and urine tests and cardio exams and neuropych exams etc etc. Some were done in earnest. Some were just going through the motions.
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Wow! Yours sounds like a vastly different experience to mine, which has been more akin to Trish's aside from the one appt with an ID doctor. If you have found that inadequate, says a lot.

I always questioned myself if the Queen of England (now the King) were to come down with the same illness as me would she get the same blood tests as me and be dismissed likewise. I think not.
 
StellariaGraminea said:
I always questioned myself if the Queen of England (now the King) were to come down with the same illness as me would she get the same blood tests as me and be dismissed likewise. I think not.
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The otherside of the medallion is that famous people are regularly seen by quacks that do nonsense. We've seen examples of the "Hollywood celebrities" visiting "ME/CFS specialists" who I'd prefer to stay away from with a 10 feet people.

My impression is those that have it best are probably those that have regular access to something like university specialists, be it via their own profession, their family or friends, a thorough GP or simply luck.

My, perhaps naive, thinking is that the lack of initial investigations might be less of a problem than the lack of a place where ME/CFS patients can go to on a regular basis for thorough check-ups.

And as you describe it's hard to understand how thorough investigations are seen as cheaper than being put on disability leave for decades, even if one ignores the human.
 
StellariaGraminea said:
I always questioned myself if the Queen of England (now the King) were to come down with the same illness as me would she get the same blood tests as me and be dismissed likewise. I think not.
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The King wouldn't be satisfied with standard care, that's for sure.

www.independent.co.uk

King Charles appoints pro-homeopathy doctor as head of royal medical household

King’s controvesial decision of appointing Michael Dixon as head of royal medicine household is under scrutiny
www.independent.co.uk www.independent.co.uk

www.facultyofhomeopathy.org

His Majesty King Charles III | Faculty of Homeopathy

Royal Patron of the Faculty of Homeopathy
www.facultyofhomeopathy.org www.facultyofhomeopathy.org
 
I had general testing ,and was then shocked at the lack of further testing. After all those news stories about advances in diagnostic testing, all I got was "Sorry, can't help you."? Now I think I'm satisfied with the testing that I've had. Not because it was thorough, but because I'm more aware of the limitations of diagnostic testing. I'm pretty sure that some groups have done pretty much all the available testing on some PWME and not found anything significant, just some minor abnormalities that don't have a clear explanation. Other diseases do have tests available, but without a clear indication for when it's worth doing that test. Other diseases might show up on existing tests/scans, but only if an expert is looking for that disease in that data. So, if you did go in and got every diagnostic test available on this world at this time, chances are fairly low that they'd find anything.

My symptoms fits ME well. If this is actually some other extremely rare disease, I think it's highly unlikely that any medical team would be able to diagnose it properly.
 
Yes, I think I did.

I had a lot of blood tests, and at different stages head CT (to rule out MS when I developed my odd gait) and spinal MRI (for something else not typical of ME/CFS, but I can't call to mind what).

But also quite a lot of questioning over a long period. I mainly engaged with the GP when I crashed and needed sick notes, so that was when they reviewed it.

Asked at a given moment in the past, I wouldn't necessarily have felt satisfied. But on reflection I think they did enough to exclude other conditions. They ruled out the obvious and then had no alternative but to wait and see what developed. When no new symptoms emerged and nothing escalated, the conclusion was fairly obvious.
 
I think narcolepsy was ruled out because I only had hypnagogic hallucinations however I didn’t know narcolepsy was being considered. If I had, I would have spoken about the times I thought I was getting narcolepsy and falling asleep, or unable to move…
Although that was Peter White, who misdiagnosed me anyway
 
This is always in the back of my mind. My sense is medicine has two forks: normally try to minimize testing of apparently healthy people, however, if a serious condition is suspected, then even quite invasive testing is soon on the table. When my partner had unexplained bacteremia (bacteria in his blood), the hospital kept him for a week and scanned pretty much every organ. When pwME show up with complaints that sound like "fatigue" to the doctor's ears, we end up in the first category.

This was my experience in the US. No doctor I saw tried to do a formal differential diagnosis. All my testing came either from a regular doctor making an unsystematic guess (low iron, low vitamin D etc.) or me going to a specialist with the line "I know you wouldn't normally test in this case but this is seriously interfering with my life and I'd just like to rule out..." I was lucky and almost everyone I saw was understanding.

That all said, I have not heard of any other diseases where you routinely end up in bed for days with symptoms indistinguishable from "coming down" with something that never turns into the flu. That fact, plus some other symptoms, probably contributes more to my confidence than my official diagnosis.

Is anyone advocating for an ME/CFS differential diagnosis standard? I've seen a couple floating around.
 
My doctors never ordered tests to rule out other conditions, they just run routine tests and then dismissed me. I however have run a number of tests either myself or something bought privately to rule out other conditions like MS. I doubt I will ever get a diagnosis from my GP or otherwise of anything, if a treatment appears the only way I am getting it is privately/purchasing it myself, my GP simply does not believe in the condition and refuses to read the NICE guidelines.
 
To me, the exclusion process is rather straight forward. Test for and rule out the usual suspects, and then it is ME/CFS if you have PEM as a symptom. The tricky part is how you define PEM. There seems to be enough of misunderstanding of PEM, so that conditions like hemochromatosis are sometimes diagnosed as ME/CFS. Patients and practitioners need to get educated about PEM to avoid misdiagnosing non-ME/CFS fatigue conditions as ME/CFS.
 
poetinsf said:
To me, the exclusion process is rather straight forward. Test for and rule out the usual suspects, and then it is ME/CFS if you have PEM as a symptom. The tricky part is how you define PEM. There seems to be enough of misunderstanding of PEM, so that conditions like hemochromatosis are sometimes diagnosed as ME/CFS. Patients and practitioners need to get educated about PEM to avoid misdiagnosing non-ME/CFS fatigue conditions as ME/CFS.
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I was pre- PEM as a symptom times.
 
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