In Tears..

[erikainorlando]

OK so most of you know there was a mix up at my doc's with my disability notes and they closed my disability case...I am in the middle of having it reinstated but my EP that I loved resigned and I had to see a new guy today.

I waited my alotted 2 hours to see him and the first thing he said was "your thinking and attitude can cure you"...hmmm so now I am speculative.."if you push through this POTS then you will feel better..don't let it define you"..

so I figure ok some ok points there and I talk to him about getting POTS and having had Guillain Barre..some overlap there possibly..so I say now I still can't work but my paperwork was messed up bla bla bla..

He says.."I am not comfortable doing this for you".....everyone with POTS works..even those who afre passing out all over the place (which you are not..he points out to me) work...

I got very angry...said I never have asked for anything for nothing! I have worked post Guillain Barre and most doctors would keep me out just on that. He told me to get a neurologist that would file for disability from the Guillain Barre! I told him my neurologist had no problem doing that but in fact if I had not gotten POTS I would be working out of shear determination...but due ot POTS I real real realy can't. I went crying to the office manager who was compasionate and understaanding but obviously can't write me out of work!

I don't know what is worse...feeling horrible all the time or having people assume I am really not that sick ... including the medical profession..and treating me as if I am a hypochondriac!

Is this true? How do people work when I can't even promise I can blow dry my hair..let alone cook dinner...I mean I am sure some people can with POTS but not all can..??!!

Help!!

Erika

[vemee]

You need a new doctor, this one hasn't a clue what pots is. He probably just thinks it is just glorified sinus tachycardia. I have been there and have heard that I wasn't sick and that if I didn't like my job to get another one but the doctor wasn't going to risk his reputation by recommending disability for pots. I did get disability and others on the board have too, but I still run into doctors that think it is all made up.

I had to go to Cleveland Clinic to get a firm diagnosis, so you might want to go somewhere with a good reputation that knows about pots. They may or may not want to do the paper work for disability but you can give what they find out about you to a doctor who will listen. Also the disability process goes smoother with a lawyer. Find a disability lawyer that gets paid out of the back pay the government owes you.

[futurehope]

My opinion is this doctor is saying whatever is necessary to keep from being the doctor who fills in any disability forms, or from potentially being called to testify on your behalf.

My neuro refused to write out anything for my disability claim, but I got the disability anyway, based on his doctors notes and the notes of other doctors.

The notes I'm referring to were the "normal" patient notes that every doctor takes.

He probably freaked when you mentioned paperwork. It stinks, I know. I'm so sorry that you have to go through this.

[toddm1960]

In my 5 year journey I've seen 28 doctors.......so far, going to see the 29th next Wednesday. I've learned not to waste time on doctors like this, fire him and keep moving forward. Find someone who will help you, and work with you. Not shut up and suck it up, everyday you waste with this guy is a day longer for you to get help. Good luck finding another doctor and I hope you start to feel better soon.

[Brye]

New doctor for sure!!! It's so hard though when you need keep starting over. My EP doctor was so afraid of the liability if I fainted at work he jumped at the chance to get my disability approved. He wrote me these horrible return to work notes that I think he knew would be denied because he was afraid of a lawsuit. "Return to work but provide patient a safe environment should syncope occur" What is that ... a rubber room? That one was denied. Keep looking and don't waste anymore time on him. I've found the cardiologists in this area are too burdened by just keeping up with the typical daily cardiac patients they don't have time to figure out the best treatment options for me. As soon as I figure out I'm a burden to them it's time to move on!! I'm not paying them money to burden them, I'm paying a lot of money to get some help.

Good luck!

Brye

[Kitsakatsa]

Yes, people with POTS work. I went back to work after diagnosis because we were told that within 2 months, POTS would be healed, gone, done with. Right.

Let me tell you from someone who works. It is far from ideal and frankly it is misery on wheels. Had I known that 6 years later I would still be struggling every day- I would have gone on disability straight away without question. Problem is- now I've documented that I can work and so disability is probably never ever within reach.

Yes. POTS patients work. Some work full time, some also go to school, and raise children, fix dinner. But SHOULD POTS patients work- maybe not. It is dang hard. I liken it to having a chemo patient or a heart failure patient work. Yes, they can. They can work full time. But, the sacrifices are great and as we know-- POTS is a very individual thing. If the meds don't work on you- there is no possible way you can work.

Time to find a new doctor. My doctor recently told me that some doctors know they can't cure POTS and so they don't want to be associated with it. They throw out the baby with the bath water: they dismiss POTS and in doing so, dismiss their patients entirely.

Wish you were in Utah. You could share my doctor. He's fabulous.

Kits

[Kitsakatsa]

Just re-read my post. I don't mean to discourage you from trying work. I just want you to know that I empathize with you and I know that you are making the best decision for you.

Hang in there, and lots of hugs

Kits

[erikainorlando]

Thanks...it was not discouraging Kits...just empathetic. And I appreciate it!

For me it is not even a decision, truley, I can't handle being upright like that..at all....it is cold hard reality...work one day in the hospital the next...chest pain so severe from forcing myself to function that morphine via a drip was hte only solution. So weak I couldn't walk across the room...I would start to shake and fall over...but I know I don't have to convince you all...

I can function if I am able to go very slow and I lay down every few hours....this way I can live but working ...well...it is not even possible. That is what freaks me out...it isn't like it is uncomfortable...it is impossible and it scares me............

Sorry for my bla bla bla...thanks for all your support...you guys are the best.

[MightyMouse]

Hi Erika, if it were me, I'd have told the doctor he was misinformed, ask for a piece of paper and then on it, write "I am requesting my full and complete medical record", sign it, hand it to him and I'd finish it by saying "your duty of care is terminated" (duty of care is a legal term for medical professionals, who are obligated by law to give you a basic "standard of care"). It's a technical way of saying "you're fired."

Onward. If you can't work, you can't work. That may change in the future, but right now, it is what it is. Find a doctor willing to work with you.

Nina