What if FFI, SFI, or CJD are more common cause they misdiagnose often

[Meriland30]

I keep hearing from people that, SFI is extremely rare (less than 20 ppl ever had it), and CJD is relatively rare (300 cases per year). I keep reading though, that it is speculated that a lot of dementia, alzheimers, ameobas, etc patients are likely suffering from cjd/ffi but were misdiagnosed with more common ailments cause, well, sfi and cjd are not identifiable till autopsy, and I aint even counting the countless people who opt against autopsy or hospitals that are not obligated to share records. A article speculated the amount of CJD patients yearly could be 20-50 THOUSAND.


So how am I, or we supposed to reassure ourselves that either prion disease is rare, like, ultra rare ...and is not just a illusion?


I am personally suffering from symptoms like insomnia, excess dreaming, vertigo, headaches, which fall in line with it in most respects...and the only thing I have to hold on to is it's incredible rarity, now I dont even have that to hold onto...

[Phuzella]

I have all of the symptoms you describe , not so much the dreaming, and they are migraine/ anxiety related :)

[Catherine S]

I don't think they have to wait until autopsy for a diagnosis of cjd, this can be diagnosed while alive and suffering. I also doubt that dementia is the same thing as this particular disease. I don't know much about the others you mention though.

ISB ☺

[Fishmanpa]

I keep reading though, that it is speculated that a lot of dementia, alzheimers, ameobas, etc patients are likely suffering from cjd/ffi but were misdiagnosed with more common ailments cause, well, sfi and cjd are not identifiable till autopsy, and I aint even counting the countless people who opt against autopsy or hospitals that are not obligated to share records. A article speculated the amount of CJD patients yearly could be 20-50 THOUSAND.

With respect, you're desperately looking for a way to validate a totally irrational fear. This simply is not the case IMO. I know about rare illnesses as I just went through it with my wife. Fortunately, I got her to a facility that correctly diagnosed her and she's in recovery. So while things like this happen, it's not happening with the illnesses you're talking about. It's. Just. Not.!

Even to entertain your theory... it would mean you have less than a .0006% chance of that happening... in other words.. NO REALISTIC CHANCE AT ALL! EVER!

Positive thoughts

[MyNameIsTerry]

I would have thought SFI is diagnosable whilst alive. I've only read a few case histories of it but at some point their symptoms were very obviously SFI.

So, what other disorders also cause the symptoms you are experiencing? I've had all those on your list and many more. Can you see that you are looking only at the most rare here? Those symptoms will be found across many disorders.