Autonomic Specialist and Disability

[Sophia3]

Ok, I am not naming names but just heard from a girl who went to research for a week in facility. Still sees one of the BIG NAME ANS docs a couple times a year. She lives 20 minutes from his office.

When SHE APPLIED for disability, he wanted NOTHING to do with it. He said "How do I know you are disabled"????????? Excuse me? All these guys KNOW THE DEBILITATION of this illness yet NONE will support the medical help needed to apply for SSD?

What is up with that? All these guys want/beg for research dollars/patients, but don't want to assist ill pts in Soc Sec disability paperwork??

So my friend had to see her wonderful G.I. doc to get the paperwork done to get the disability.

She STILL SEES said ANS specialist and sometimes he is rude and insulting to her. But if she takes her mom or husband into the exam room, he is very nice and a different personality?? This isn't the first time I have heard stories on some of the so called great docs.

So me thinks these specialists need to be more 'compassionate' in their PRIVATE PRACTICE!! How is ANYBODY supposed to take our limited abilities seriously if the quote "ANS SPECIALISTS" will not back our claims?? If they dismiss us?

I don't mean to stir anything up but this makes me angry.

How is dysautonomia EVER going to be specifically listed as an impairment if the docs themselves do NOTHING to promote how it is robbing many of us of an ability to make a living or to have a social life.

What say you?

Edited March 14, 2005 by Michelle Sawicki

[Guest GayleP]

I agree. If the ANS specialists aren't on our side then who is going to be? They need to be advocates for this disorder in order for everyone else to take it seriously.

Edited March 14, 2005 by Michelle Sawicki

[dawn]

RIGHT ON!!!!!!!! I totally agree. My internist hates the social security system. He worked in occupational medicine for 10 years. He says it's a crap shoot. He has a patient who is an alcoholic who got it on the first try, meanwhile his ex wife who is raising the kids, has 2 jobs, diabetes and arthritis has been denied. I think we all need to bother our congressman and legislators daily. I have filed for ssdi (January). Have gotten extra forms to fill out but am expecting a denial. But I am ready to fight this to the end. Wait til some of these doctors or their family members get full blown POTS, things will change. I posted again today under my disappointment with Dr. Low. Read it see what you think.

Dawn

[morgan617]

Dawn, I did respond. I guess we all have our opinions and some are more outspoken. I am somewhat quick to judge, a failing I have always had, but I do have to agree with you on this one. My primary and I have been met with nothing but rudeness and inconsideration by every doctor we have contacted back east. I will not name names, but suffice to say my records and his calls have gone to at least 5 or 6 different specialists. Unfortunately, I don't find it at all unusual that they blow me off, but the utter lack of consideration for a peer boggles my mind. I have never seen that kind of rudeness here between doctors. Ever.... I wrote to one of them and told him that and never received a reply, what a shocker... I really am sorry for your plight. My doctors, most of whom know next to nothing about pots have been very supportive for the most part. I hope you find someone to answer those few short questions for you! morgan

[MomtoGiuliana]

Just my 2 cents on this--I don't think most people go to medical school strictly out of compassion for other humans. I realize this probably sounds cynical. But, it is my experience (three cousins, people I went to school with--who became doctors) that people choose to become doctors for many reasons--one primary reason--the salary and status. The medical researchers may go that route b/c of intense intellectual curiousity more than b/c they are compassionate people. Is part of the problem that our society has elevated doctors to this high financial and social status, thus the motivations to go into this profession can be perverted/skewed?

In any case, I don't know how to make someone more compassionate. It is truly sad that any doctor would not be. I have experienced both extremes in my care. I know how horrible it feels when a doctor is just downright judgmental and mean. Fortunately, I now have the most wonderful, genuine and compassionate endocrinologist -- and electrophysiogist (who is a POTS expert). I send them thank you notes every Christmas to let them know how much I appreciate them!

I am really puzzled by these recent posts that ANS specialists show lack of recognition of the disabling nature of these conditions, let alone compassion--despite what the literature says. We have a long fight ahead still.

Katherine

[Sophia3]

Mom to G,

I know after hearing DIRECTLY in email from a friend who can't get one of the most famous ANS researchers to help in her recent disability situation, I was livid.

Sure, these guys are busy and can't be everybody's attending doc, blah,blah, blah. But to BLATANTLY talk about the disabling aspects of this condition on one hand, and then to tell pts to their face "How do I KNOW YOU ARE DISABLED?" on the other, sorry. I ain't buying it.

It's not right. It's insulting. I have DECIDED I DO TAKE IT PERSONALLY.

What good is studying a poorly misunderstood illness that is often mistaken for anxiety, if docs turn around by ADDING to the anxiety by questioning ones daily limitations, and therefore, one's disability qualifications? It boggles the mind when you think about i.

Edited March 14, 2005 by Michelle Sawicki

[yogini]

I respectfully disagree that their research is useless! It is indeed essential to many of us, as drugs and treatments developed by them enable many of us to function at a level where we do not require disability.

I also understand why some of these doctors might be unable to get involved with disability cases, as was beautifully explained in some of the responses to Dawn's post from the other day. One of these leading researchers told me he had to turn away 80% of the patients who applied to see him. I know he has helped several people on this board, I can only imagine how more of us he'd have had to turn away if he took on added responsibilities.

However, if these doctors are unable to get involved in disability cases, I do agree that they need to be a bit more sensitive. There is certainly no excuse for questioning whether a person is actually disabled. Also, it might be better if they would inform us up front that they are unable to get involved in the disability process, so we would know what to expect.

Anyway, just another perspective.

[morgan617]

I don't think anyone meant to say their research is useless, however the attitudes are. There are way too few doctors out there working on ans. I understand how busy they are. And I agree that they can't be expected to do everything. However, that does not excuse making a patient feel worthless. The research is important, but so is follow up and compassion and the very real concern of how disabling this is to so many. I'm not sure as I read the research reports wriiten by these guys stating how disabling it is compares to their lack of understanding how disabling it is. I have never felt so useless in my life, or like it had any less meaning. Talk about a potshole, I'm in a canyon! And if my primary treated me the way Dawn was treated, I would be devastated. I had a cardiologist write and ask me to discharge myself from his practice (after he did an ablation he then found out he shouldn't have) He turned it around and made it my fault. He stated he had done all he could. Well he certainly had. All I'm saying is we have to take so much responsibility for our own health, the last thing we need is to be dissed by someone we thought we could count on. In a form letter no less. He should have explained right up front that all he would do is research and absolutely nothing beyond. And if all you do is research, you never get close enough for them to feel like they can depend on you for anything else. I would have expected to go to a research facility, have them do their thing, send a report to my doctor, and that's it, all she wrote. But it sounds like Dawn saw him several times. When that happens, you form a bond whether intentional or not. That bond should never have been allowed to happen if there was absolutely no interest in helping. You have to divide research from appointments. Period. I think it is a very long road to really get any answers, but in the meantime, we need to be validated, not only by the people on this board, but by doctors, researchers and anyone involved in this process. Man am I too talkative today or what. I just get livid over doctors and their God complexes. If you can't deal with the heat, get out of the kitchen. Become a pathologist. morgan

[MomtoGiuliana]

Rita--I think you are right--and as you pointed out, this disability paperwork issue is also discussed in the below thread already--

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2070

I definitely understand the frustration and the hurt regarding apparent lack of compassion from doctors who have devoted their lives to understanding ANS conditions. Morgan, I agree, it is nothing short of devastating not be be validated, especially when it is regarding a condition that has so affected your life. On top of it, it is an uphill battle for many to get disability.

There are also other discussions on here on the topic of successfully obtaining disability benefits. These are some of the most recent ones:

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2057

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2017

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2025

Also--from the general info posting by Nina recently:

Sites with information on disability advocacy, disability law, getting through the process of applying for disability benefits

http://www.disabilitysecrets.com/administr...-law-judge.html

http://www2.rpa.net/~lrandall/disabled.html

http://www.ssa.gov/disability/professionals/publications.htm

http://fmscommunity.org/disability.htm

http://www.disabilityfacts.com/resources/outline.html

http://pbcers.org/SSD-ALL.htm

Katherine

[Jersey Girl]

The Social Security System is what it is, but I agree with Sophia in the lack of interest of most autonomic specialists in how this condition affects our lives. I know that many chronic illness clinics in major medcal centers have a social work department and other team members attached to them so that a patient has a full complement of services and the physician is free to pursue just the medical aspect of the illness. I thought that I would be treated better by an autonomic specialist I saw after diagnosis, but they make you think that you're just complaining about nothing when it is truly life-altering. Martha

[Sophia3]

CLARIFICATION: Research for treating the illness is not useless. but to TOTALLY lack compassion and play "stupid" that they can't determine who is disabled and who isn't, IS USELESS.

It is TOTALLY POSSIBLE to have written NUMEROUS ASPECTS of the DISABLING DEGREES of ANS problems w/o pretending and insinuating, DISABILITY doesn't exist. You can say, "hey, I can't get involved personally cause i research too many patients and dont see them regularly but show my papers to your doctors to help EXLAIN the affects of this illness that it INDEED can be quality of life ALTERING. THAT WAS MY POINT.

If the ANS EXPERTS aren't even willing to share articles about bedridden pts, patients who consider suicide and are wheelchair bound, etc, how is the Social Security administration supposed to EVER think ANS is anything more than ANXIETY?

Sure there are subset categories on which to apply and it's the limitations not the dx and label. Still, it is mind boggling that they REFUSE TO GET INVOLVED.

I totally understand a doc not wanting to if he isn't the attending, treating physician. But if one sees an ANS "specialist" 3 times a year and he implies "why can't you work?, does anybody have a clue how that would make a patient feel?

Morgan got my point.

BESIDES, tilt table tests should be ALLOWED to be used for evidence since they are clinical proof of our problem with gravity.

Ok, off the soapbox. I am way too tired to continue this rant. But my friend who I have spoken with on the phone and in email, refreshed my memory last night that her G.I. doc had to help with ANS issues, and it made me mad all over again!!

So I have officially closed my mouth on this subject.

But as far as the ego of the ANS docs with all their own "separate theories and speculation" they need to realize it's the squeaky wheel that gets the grease but the wheels that role together actually get somewhere. In other words, they could certainly write a team effort report to enlighten the Soc Sec system!!

Peace

Edited March 14, 2005 by Michelle Sawicki

[Michelle Sawicki]

It is understandable that some of you may be upset at the way you have been treated by doctors, but please no swearing or bashing others on the forum. This is not the place for such negative energy. Strong feelings can be a great catlyst in producing change, and I encourage all of you who have these strong feelings to attempt to channel your energy into creating positive changes in the dysautonomia community.

Michelle