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POTS and Disability


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#1 bbdeezy

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Posted 06 October 2005 - 09:35 AM

Hello all and its great to find a place where i can feel support. I just filed for disability Aug 31 , 05. I filled out my daily activity questionaire yesterday . I am mainly wondering how many POTS people have been approved for ss Disability and if so how many tries did it take? Also Is anyone from Michigan that has found a good Dr here? I was diagnosed at Cleveland but its 5 hrs away and my ins doesnt cover the visits

#2 Sunfish

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Posted 06 October 2005 - 09:56 AM

hi bb-
welcome! i recognize your name from the NDRF forum (i read & occassionally post there) but am glad you found your way here too. i'm in a similar situation right now; my LTD (through my employer) required that i apply for SSDI so i did so in June & b/c i moved from one state to another things were delayed a bit, so i too just filled out the oodles of supplemental questionaires. my mom just filled one out (about me) as well.
you may want to do a search for disability (search feature is on the upper right hand corner of the screen) as you'll find a lot of former discussions & a wide range of experiences. here are two to get you started:

http://dinet.ipbhost...8&hl=disability

http://dinet.ipbhost...7&hl=disability

i'm guessing though that the poll is a bit "off" in terms of actual statistics b/c it is actually very common to be denied initially. most people are approved at some level of appeal, but there is a wide variety, esp as individuals on the site vary widely in terms of severity of symptoms. different states are a bit different too.
if you haven't already, the ssa.gov website has a lot of thorough info about the process itself as well. regardless, i'm definitely finding the process to be tedious!

good luck,
B) melissa

#3 melly4

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Posted 06 October 2005 - 01:31 PM

I applied for disability back in April of this year. The paperwork says that it usually takes 3-4 months, but it has been 6 months, and I still don't have a decision. I also moved recently to another state, so this may have had something to do with the extra time. I received a letter saying the state wanted me to see one of their "doctors" when I moved here to Georgia. Interestingly enough, I went to the appt. and found out the guy had a PhD in psychology!! What a hoot!! So, who knows what's going to happen? I called yesterday, and they told me I should have a decision by November. I agree with Melissa: it's a tedious process.
Hang in there.

Melly

#4 Miriam Poorman-Knox

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Posted 06 October 2005 - 01:55 PM

I applied in 12/03- Was denied. Had an attorney and a hearing 9/7. Approved 9/16. Retroactive to 2/02. After 5 mos. waiting. Make sure you have all your record keep all, very important. Miriam

#5 bbdeezy

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Posted 06 October 2005 - 02:01 PM

ok.... I goofed... so what do I do now that i did all the filing before I got advice or found this forum. I let SS get all the records...i only have some medical records from 1 doctor. Also I got a letter stating that I have to see one of their Drs for a MENTAL EXAM.....oh my ....makes me nervous

#6 faithinspires

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Posted 06 October 2005 - 02:41 PM

I applied without an attorney, signed releases to all my medical records, filled out the questionaire, was approved for ssi 5 months later...but will be up for review.

#7 Sophia3

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Posted 06 October 2005 - 03:59 PM

I mention the DISINISSUES web site in another thread. I suggest you sign up for their group.

It stands for Disability Insurance Issues. Good luck.

#8 melly4

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Posted 06 October 2005 - 07:37 PM

Don't be nervous about the mental exam. As I mentioned, I had it, too. The guy was really nice to me. I just wrote down everything I could as far as symptoms and impairment, last work dates,etc. I had already signed a release for them to get my med records. Just answer his questions and be honest. Oh, and I brought my meds that I was currently taking and a picture ID. They asked for that. Be prepared that they might take your picture for ID purposes. He took mine. It was kind of like the CIA, though. They interviewed me and my husband together, then my husband alone, and then me alone. I guess to make sure our stories corroborated!! ;) I hope that doesn't make you more nervous. He really was very sympathetic to my symptoms and lifestyle impairment.
It's my understanding the gov't wants these exams because the med records are incomplete or conflicting. It's stupid, though. How can you not have conflicting medical records when not many doctors are educated about dysautonomia and all have their own opinions as to your diagnosis?!

Best of luck,
Melly

#9 Tiner's Roscoe

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Posted 06 October 2005 - 08:42 PM

At what age do you file for Social Security support? I have a daughter approaching 18 w/ POTS. Her father and I, as well as her doctor, know she won't be able to hold a full time college load to maintain insurance long term under our plan and it was recommended I have her declared as disabled, but I'm not sure how to go about that.

Anyone have any insight or direction for me? We just need to make sure we maintain insurance coverage.

#10 bbdeezy

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Posted 06 October 2005 - 08:57 PM

My nephew is legally blind and has Cerebral Palsey. he is 14 now and has had SS disability since age 6 and will keep it the rest of his life. He had 3 reviews and they told her on the last one that they know his condition will worsen so no need for further reviews. So no age is too early to start the process