UNDIAGNOSED DISABILITY

[PicoBoulevard]

I am already on SSDI for psychiatric reasons, but over the past three years have developed a debilitating physical condition that leaves me bedridden several times a week and in intense pain.

I've seen a total of seven specialists, one clinical researcher, and two PCPs so far:  three gastroenterologists, one neurologist, one psychiatrist, the researcher, the PCPs, and two bariatric surgeons (I had bariatric surgery three years ago) and still no one has been able to confidently confirm a diagnosis.  (Although each has speculated, and their speculations are different). 

Of course I have undergone every test imaginable:  several CTs, MRIs, and Xrays, multiple blood tests, colonoscopy, endoscopy, stool samples, specific genetic tests, etc., but none reveal anything that could definitively prompt a conclusive diagnosis. 

This has all led me to wonder about people who, unlike myself, are not already on SSDI for another diagnosed condition, are completely disabled from their condition, but who have no formal diagnosis and no tests which can point to a specific deviation that would explain their illness and its symptoms. 

Does SSA just immediately deny them because they have no diagnosis or hard evidence showing the cause of their illness?  Do they fall through the cracks because there is not objective evidence that they are ill? 

I recently read that it takes an average of seven years for people in my situation to finally receive a diagnosis if they keep seeing different specialists and possibly participate in clinical trials.  In some cases, it turns out that their disease is extremely rare and few doctors even know about the condition and what tests to perform for it.

But a large percentage remain undiagnosed for the rest of their lives and end up just relying on meds that may diminish the symptoms and pain if they are lucky. 

Does anyone know what happens to these people when they apply for disability and have no objective and test results that can identify their illness' cause? 

[Just Me]

A person had to be diagnosed with a Medically Determined Impairment in order to be approved

[newdawn]

Definition of an MDI:

What is a "Medically Determinable Impairment"?

A medically determinable physical or mental impairment is an impairment that results from anatomical, physiological, or psychological abnormalities that can be shown by medically acceptable clinical and laboratory diagnostic techniques. The medical evidence must establish that an individual has a physical or mental impairment; a statement about the individual's symptoms is not enough.

https://www.ssa.gov/disability/professionals/bluebook/general-info.htm

See also:

DI 24501.020 Establishing a Medically Determinable Impairment (MDI)

A. Definitions
For the purposes of determining whether the claimant has a "medically determinable impairment (MDI)", the following definitions apply:

-Objective medical evidence means signs, laboratory findings, or both.

-Signs are one or more anatomical, physiological, or psychological abnormalities that are observable, apart from the claimant's statements (description of symptoms). Signs must be shown by medically acceptable clinical diagnostic techniques. Psychiatric signs are medically demonstrable phenomena that indicate specific psychological abnormalities, e.g., abnormalities of behavior, mood, thought, memory, orientation, development, or perception. Psychiatric signs must be shown by observable facts that can be medically described and evaluated.

-Laboratory findings are one or more anatomical, physiological, or psychological phenomena that can be shown by the use of medically acceptable laboratory diagnostic techniques. Diagnostic techniques include chemical tests (such as blood tests), electrophysiological studies (such as electrocardiograms and electroencephalograms), medical imaging (such as X-rays), and psychological tests.

NOTE: Symptoms are the claimant's own description of his or her physical or mental impairment(s). Symptoms cannot establish the existence of an MDI.

B. Establishing The Existence Of An MDI
We need objective medical evidence from an acceptable medical source (AMS) to establish the existence of an MDI. See DI 22505.003 Evidence from an Acceptable Medical Source (AMS).

We cannot establish a MDI using any other kind of evidence, including:

-A claimant's statement about his or her symptoms,

-A diagnosis, or

-A medical opinion.

C. Symptom Evaluation
Only after we establish the claimant has an MDI based on objective medical evidence from an AMS, can we then evaluate the extent to which symptoms may affect the claimant's ability to perform work-related activities for an adult or ability to function independently, appropriately, and effectively in an age-appropriate manner for a child under age 18.

If there is no MDI, or if the established MDI could not reasonably be expected to produce the claimant's symptoms, we will find those symptoms do not affect the ability to perform work-related activities for an adult or the ability to function independently, appropriately, and effectively in an age-appropriate manner for a child under age 18.

For a detailed discussion on how to evaluate symptoms, see Social Security Ruling 16-3p: Titles II and XVI: Evaluation of Symptoms in Disability Claims and DI 24501.021: Evaluating Symptoms.

https://secure.ssa.gov/poms.nsf/lnx/0424501020

So I guess technically you don't have to have a diagnosis of an MDI; you just have to establish the existence of an MDI via "objective medical evidence" which is defined as "signs" and/or "laboratory findings" above (both signs and lab finding are also defined above).

You wrote, "no tests which can point to a specific deviation that would explain their illness and its symptoms." Well, they may not have a specific diagnosis, but are there absolutely no unusual lab findings and/or nothing abnormal that could be observed by an acceptable medical source to prove an MDI exists?

Usually establishing an MDI isn't the biggest hurdle in the 5-step sequential evaluation process. Yes. I would think it might be more difficult if your doctors can't agree what is going on with you medically and there's not a definitive diagnosis, but let's say you have terrible diarrhea every 10 minutes or something and are losing a lot of weight. Maybe the doctors haven't pinpointed the exact cause, but I assume one's doctor could document the number of trips made to the bathroom during each doctor's appointment and even check your stool once or twice and keep track of your weight loss over time. I'm just trying to brainstorm to give an example here. Maybe not the greatest example?

[PicoBoulevard]

Actually New Dawn, you gave very good examples of symptoms/signs that in my particular case are well-documented, and there are a few abnormal test results, too, but they don't point to any particular diagnosis.  But like I said, it's just a new lousy physical illness I'm dealing with while I'm already on SSDI.  I feel really sorry for people who are suffering from serious symptoms but don't have enough thorough documentation to meet SSA's criteria. 

Fibromyalgia is a variation of this because it *is* a diagnosis but it is based upon a person's subjective complaint that, among other things such as fatigue, they are suffering from widespread pain.  Apparently, a rheumatologist can confirm this diagnosis and then list the person's limitations due to the fibromyalgia.  But getting approved for fibromyalgia is apparently incredibly difficult. 

[Just Me]

A doctor can diagnose fibro with trigger points and elimination of other conditions. At this time there is no definite test that diagnosis fibro. I have read about a blood test. But the last time I checked. It is not a absolute confirmation of fibro.