• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Would a negative test ...

Kati

Patient in training
Messages
5,497
at this time, affect my disability negatively?

I just got my disability approved earlier this month, based on my functional (or lack of) assessment. I have yet to see a rheumy- probably the specialist of choice here in my area, in 2 weeks time.

I recieved my testing kit from VIP DX this week and would like to be tested, as I want to know. Simple reason, I am curious. I am aware of the pitfall of the test, but a positive test would help me out getting tested for co-infections etc...

I was told that perhaps a negative test could put a dent on my disability- and would like to have opinions.
we all know that a negative test at this time is not a definitive negative. I certainly know that I have something- and am on a continuous decline since this summer.

I so want to know!
 

FernRhizome

Senior Member
Messages
412
neg test & disability

If you have a negative test you don't have to share that paperwork with anyone. So I wouldn't worry about that. Also a negative test could be a false negative and the testing is not yet considered utterly trustworthy.....so a negative could become a positive when the testing is more refined. ~FernRhizome
 

Kati

Patient in training
Messages
5,497
The test results go to my dr's office, and they scan it and put it in my electronic file. The disability insurance has the right to look in my file.

But I agree that a negative now could be something else down the road. Or maybe an opportunity to check out other diagnosis possibilities. :confused:
Although I am pretty sure that ME/CFS is pretty much what I got. (and XAND???)
 

Kati

Patient in training
Messages
5,497
Long term disability= from work.

And my file is still up there- they planned rehab for me (physio) then back to work- now- they are holding on the physio and sending an occupational therapist for me. After that, who knows.
 

acer2000

Senior Member
Messages
818
I am pretty sure disability is not based on what pathogen/disease you have, but what your functional status is. For example, you can have a disabling disease (ie MS, an injury, heart failure, etc..) but if you don't have objective functional impairment that would prevent you from doing your job, you won't get disability. However, some people with those problems do get disability because their disease is severe enough. Objective evidence of impairment = low scores on neurocognitive tests, poor stamina as measured by exercise testing, SPECT scans that confirm the cognitive tests, etc... not viral titers, blood counts, etc...

As an aside, different policies have different terms - so this might not be 100% accurate for everyone. It's just based on my experience with my employer's long term policy.
 

Kati

Patient in training
Messages
5,497
Thank you Asus.

I have a question though, how much weight does a doctor's opinion have on disability?