20 percent of patients with serious conditions are first misdiagnosed

[undiagnosed]

Washington Post article

Journal paper

 

[Hip]

That percentage seems quite low, given how difficult diagnosis is.

 

[Sancar]

7 years... 7 years plus of my life, all down hill, dozens of Drs & test...$$$,$$$,$$ all my net worth plus now in debt... due to "Medical Ignorance"! where is the "Hippocratic Oath: Do no harm"? Physical, emotional, financial and other ways I can not put in words...

How many, many, many ME/CFS suffers are left to be squandered for "Medical Fodder"?

*Present company/Doctors et al. excepted

 

[undiagnosed]

@Sancar, I am at over 6 years myself trying to get diagnosed. Still haven't found a single doctor that I feel is competent and trust. Funnily enough, the referenced study was done by Mayo Clinic who rejected my application to be seen, go figure. By the way, nice pup. Something about him/her makes me laugh (in a good way).

 

[Sancar]

@undiagnosed, So sorry to hear you are stuck and suffering. I applied for Mayo early on and they wouldn't except my insurance, and their cash price was out of the ?! I did go to the Clevalnd Clinic on 2011. It was a good start. I couldn't afford to go back for further testing. I'm surprised we don't see our disease on their radar.
Thanks for the compliment on 'Liza'. All of 6lbs, rescue mutt, a real character. I think she rescued me

 

[Jigsaw]

@Sancar @undiagnosed

I was almost exactly 30 years down the Mystety Illness line before I got diagnosed.

I always thought that once they knew what was wrong, i.e., I got a dx, they'd be able to fix it, or I'd be able to fix myself.

How wrong can you be?

 

[undiagnosed]

@Jigsaw, ya that's something that I've realized. Even with well established diseases like HIV and Diabetes, I've read things from diagnosed patients where their symptoms are brushed off or doctors don't really understand what it's like to manage. There is a lot of grey area and unfortunately diagnosis doesn't mean all of the problems will be solved, especially for many chronic illnesses. I think that's why it's important for patients to collaborate and share that information so that we can all learn from it.

 

[Jigsaw]

@Jigsaw, ya that's something that I've realized. Even with well established diseases like HIV and Diabetes, I've read things from diagnosed patients where their symptoms are brushed off or doctors don't really understand what it's like to manage. There is a lot of grey area and unfortunately diagnosis doesn't mean all of the problems will be solved, especially for many chronic illnesses. I think that's why it's important for patients to collaborate and share that information so that we can all learn from it.

Absolutely!

 

[Hip]

I always thought that once they knew what was wrong, i.e., I got a dx, they'd be able to fix it, or I'd be able to fix myself.

That seems to be common conception that people have these days, but many diseases remain largely unfixable, even if some useful improvements can be made through medical treatments.

I think that conception probably arises from people's experience with technology: when there is a technological problem, like for example a computer system failure, usually we are able to identify and then fix the problem, and get the system working normally again. We see this happening all the time, all around us. If our Internet connection goes down, for example, we phone up technical support at our ISP, and they soon sort the problem out.

So that perhaps makes people think they can do the same with the "biochemical technology" of the body, when there is a bodily failure that leads to disease. We may think it is just a case of phoning up technical support, and our bodily malfunctions can be quickly corrected

But unfortunately, with the body it seems that it's not so easy to open up a few "control panels" or "configuration files," change some settings, reboot the system, and thereby resolve the problem. Maybe we will be able to do this in 200 years time, but at present, our ability to fix computer technology malfunctions far outstrips our ability to resolve malfunctions the body. I am sure though as medical technology advances, we will be able to fix lots more diseases.

In 200 years, if you develop ME/CFS, maybe your doctor will say, OK, no problem, we'll have that fixed by tomorrow: we'll just do an HPA axis reboot, we'll delete your adaptive immune system configuration file which has become corrupted with autoimmune data items, and we'll run a full body antiviral laser scan to remove any viral infections. That should get you back on your feet in no time.

 

[me/cfs 27931]

37 years of psychiatric misdiagnosis after a several viral infection from which I never fully recovered.

I may appear an oddity. But perhaps that is because most with histories like mine remain undiagnosed. Or without family support, they have died.

Their stories remain untold.

 

[MEMum]

@Sancar loving that dog. Wondering if we should get one...
Unless my daughter improves in the next year or so it's a serious proposition.
We feed and throw balls for my sister's energetic springer/collie cross at least a couple of times a week.

 

[Jigsaw]

That seems to be common conception that people have these days, but many diseases remain largely unfixable, even if some useful improvements can be made through medical treatments.

I think that conception probably arises from people's experience with technology: when there is a technological problem, like for example a computer system failure, usually we are able to identify and then fix the problem, and get the system working normally again. We see this happening all the time, all around us. If our Internet connection goes down, for example, we phone up technical support at our ISP, and they soon sort the problem out.

So that perhaps makes people think they can do the same with the "biochemical technology" of the body, when there is a bodily failure that leads to disease. We may think it is just a case of phoning up technical support, and our bodily malfunctions can be quickly corrected

But unfortunately, with the body it seems that it's not so easy to open up a few "control panels" or "configuration files," change some settings, reboot the system, and thereby resolve the problem. Maybe we will be able to do this in 200 years time, but at present, our ability to fix computer technology malfunctions far outstrips our ability to resolve malfunctions the body. I am sure though as medical technology advances, we will be able to fix lots more diseases.

In 200 years, if you develop ME/CFS, maybe your doctor will say, OK, no problem, we'll have that fixed by tomorrow: we'll just do an HPA axis reboot, we'll delete your adaptive immune system configuration file which has become corrupted with autoimmune data items, and we'll run a full body antiviral laser scan to remove any viral infections. That should get you back on your feet in no time.

Yeah, I know, naiive, right?

 

[Sancar]

@Sancar loving that dog. Wondering if we should get one...
Unless my daughter improves in the next year or so it's a serious proposition.
We feed and throw balls for my sister's energetic springer/collie cross at least a couple of times a week.

@MEMum ~ I have no family or friends left after being home bound (for the most part) the past 2yrs. I'm so glad I have that little face to look at and hold for comfort, humor and company. I'm glad she is 'so little'. It makes taking care of her much easier! She is a Yorkie/Chihuahua mix. It may be a great relief to your daughter to have a complain that loves unconditionally~ no matter what her progress is or becomes~ a small pet takes your mind off whatever you are experiencing in a negative way~ all the best to her for progress...