Medical Evidence Tests

[luckygoat3]

Okay I visited my lawyer today and since the only test for POTS, OI, NCS i have had is the TTT, and it was in 99 i need more evidence that i have POTS, OI, NCS and whatnot. Is there any other tests that help prove POTS, besides the TTT? If i had to redo the TTT, do i have to be off all meds?

Susie

[Rachel]

When I was in the process of applying for SSDI and appealing, I had a nurse come over to my house once a week and take orthostatics. It was part of a visiting nurse program that a nearby medical clinic did. If there isn't a nurse that can come to your house, perhaps you could go to a medical center regularly so that they can "officially" track your health. The nurse that came over to my house would check my pulse and bp after lying down for 15 minutes. Then I would stand up and she'd check my pulse and bp every minute or two for a as long as I could remain standing (sometimes 3 minutes, sometimes 10). She also kept track of how I was doing physically and how POTS affected my daily life. All of this was written down in my medical records and was then copied and sent to the judge.

You can also keep a daily or weekly journal of your symptoms, bp, and hr. This probably won't carry as much weight as records that come from a medical center, but it can't hurt to have more evidence.

I think people are usually off all meds when they redo a ttt since they can change your hr and bp. You wouldn't want to have a false negative test.

Best of luck with everything.

Rachel

[luckygoat3]

how long does one have to go off of meds for a TTT?

[morgan617]

It's very difficult to get approved for autonomic diagnoses. Do you have other symptoms. it's a political thing. POTS is not on their list. Syncope from arrythmias is more likely to be.

If you look through the archives you will find a website that helps, or someone that knows it....it would be a good idea to do that.....good luck.

[Donna F]

I just got my disability recently, unfortunatly i found out thru a friend the hard way as she works there, that with health prob it is almost imp to get it, however, just advice that works, is if the disorder causes u depression, anxiety, the truth is the only way i got my dis is thru a psychiatrist. But it worked for me and some others i know. Also my doc said he would prefer me to stay on my meds while taking the test, i have one scheduled and not sure as they all do it diff

Good luck

donna

[Sophia3]

Social Security disability is not based on this or that

illness, but on being unable to work due to your symptoms.

If your doctor has written a narrative description of how your

symptoms interfere with your ability to work, that will help you more than anything.

THEN somebody will see what your diganosis code is.

The LIMITING of your daily functioning is THE BOTTOM LINE. I got mine back in 1990, first attempt with CFS and later found out, depression was the dx as there WAS NO CFS code back then.

Please join Disinissues. they have helped me greatly with reviews and there are many savvy folks to help you GET YOUR DISABILITY.

It's important to know this.

WHAT TO SAY ON THE PAPER WORK.

WHAT NOT TO SAY ON THE PAPERWORK. Do NOT worry about the vital signs.

WORRY about PROVING your limitations.