Pots A Disability?
Posted 06 June 2006 - 05:05 PM
Posted 06 June 2006 - 06:02 PM
The disability is similar to chronic obstructive pulmonary disease or congestive heart failure. I have an article I gave my lawyer to that effect when filing for disability.
Your doctor does not seem too familiar with the effects of living with POTS. My family doctor is like that. She thinks I'm "healthy" because I do not show up with bronchitis, sinusitis or colds like other "unhealthy" people.
Posted 06 June 2006 - 06:11 PM
Unfortunately, dysautonomias are new to the medical scene and research is still being done. I was very troubled recently when a physician I was trying to educate said "anyone can bring on POTS by allowing themselves to get dehydrated"... as if to say we are just not drinking water!
futurehope...would you please post the link to that information you mentioned.
Posted 06 June 2006 - 07:12 PM
The link I had to the Mayo article no longer works. The only recourse I have is to find a printed version somewhere.
I would have to look for it in my "disability" notes.
Posted 06 June 2006 - 08:16 PM
thank you so much for posting that link, helpful information. I had one doctor tell me just treat the symptoms and go on with your life! I wish it was that simple-
Posted 06 June 2006 - 08:53 PM
Posted 07 June 2006 - 03:37 AM
Posted 07 June 2006 - 08:01 AM
Posted 07 June 2006 - 08:14 AM
Posted 07 June 2006 - 08:15 AM
its not like you have a disability or something like those people who have parkinsons or are limbless!
Before I got my POTS diagnosis, one of my doctors tested me for lupus, and the tests came back negative. A friend of mine who has lupus and lost a leg because of it was disappointed when my tests came back negative. I said, "You want me to have lupus? But you lost a leg to it, and it almost killed you." She said, "Yeah, but lupus is treatable, so I'm much higher functioning than you are now." So there you have it. A person with lupus and a below the knee amputation said that I was far more disabled than she was. And that's before my POTS got really bad.
Posted 07 June 2006 - 03:03 PM
THanks so much for this OUTSTANDING ARTICLE (though I haven't finished reading it all)
For those on disability or applying, it is NOT THE NAME OF THE DISABILITY that gets you Soc Sec or whatever. It's the proof you are VERY LIMITED and not reliable to sit up for long, stand for long, and the severe cognitivie impairment that many of us have SEVERELY. aka Brain Fog.
I got disability my first attempt in 1990 when I didn't know what O.I. was. I first had Chronic adult mono later changed to CFS (Chronic Fatigue Syndrome) I had a cognitive impairment briefing test but a psychiatrist. Between my CFS doc and the shrink, they were able to put my illness under an AFFECTIVE disorder.
When you look up my code (which most of us do not know unless we see the form, it is on the SHORT 4 page disability review form) It can mean BIPOLAR which I am not. It can also mean depression. The bottom liine, they did NOT HAVE a category for CFS so depression is how I got Soc Sec.
We NOW KNOW the reason MY situation is worsening is due to POTS..and in my case, I have gotten worse in 16 years..especially the last 5 or 6.. I told my ex cfs doc, when I stand up I feel horrible but when I lie down, I often get major relief. He didn't know OI and CFIDS Chronicle had only mentioned NMH or fainting and NOT Orthostatic Tachycardia.
No matter what the name, a rose still smells like a rose. It's all about finding a code to fit your limitations and the name is just part of YOUR LIMITATIONS and the diagnosis.
Hope you find a nicer more compassionate doctor. You deserve better.
Posted 07 June 2006 - 03:48 PM
I believe a doctor with that kind of attitude is not looking out for my best interests. I have found a new MD, and she is the reason I was diagnosed with POTS. She was the one that suggested a tilt study after 16 years with this strange disease. A new MD may be the difference in getting some quality of life back.
Hang in there.