Vandy And Social Security Disabity Documentation

[McBlonde]

Hello,

I am trying to get it together enough to file for social security disabilty.

I have an endocrinologist that treats my endocrine diseases. So, I will have his medical records for those issues.

Back in August, I started having bad headaches and nausea and while in the process of trying to determine what was wrong, I happened to see a local endocrinologist who used to be in West Virginia and his research there was POTS. He has done the "poor man's tilt table" test on me several times over the course of these months and on each occasion my heart rate has gone from about 80 lying down to 120 - 170 standing up. He's tried Midodrine and I only took 2.5 mg, but my headaches got really bad, so I couldn't take it. He plan is to try Mestinon next. I discussed with the value in finding out what particular type of POTS I had and he suggested Vanderbilt.

In reality I know that they can only treat the symptoms, just like he is doing, but I wondered, as far as documentation for my social security disability, would that be a good reason to go ahead and go to Vanderbilt?

Does anybody have experience with Social Security Disability and Vanderbilt documentation?

Thanks!!

[potsgirl]

I have experience with SS disability, but not with Vanderbilt. I don't think you need to go there for your application for disability, but you do need to have a tilt table test and a doctor who is experienced with dysautonomia write up quite a bit of paperwork for you. There are numerous documents you and your doctor will need to file for a disability claim. They must show that you are unable to do any kind of work, and that you're expected to have this disability for at least the next year. The more detailed the info, the better. I had my cardiologist here in Tucson, who deals with POTS, write all of my paperwork up, even though I went to Mayo, too. You want a doctor you can keep using over a long time period, and you have to keep getting seen every month or two for documentation.

The sooner you apply, the better. You will almost definitely be turned down the first time, then you need to appeal, and you will probably be turned down once again. Get yourself a lawyer at this point. Once I went to court with my lawyer, the judge gave me disability immediately. The entire process took almost two years, though, which is not uncommon.

Good luck, and hang in there! They want you to give up, but be persistent. If you have more questions, feel free to PM (personal message) me.

Cheers,

Jana

[vemee]

Potsgirl gave good advice. I want to emphasize that you need a lawyer. It seems those with lawyers have a better chance of getting approved. You will probably get turned down twice and then have to request a hearing with a social security judge; that is where most people are approved. A lawyer will also be helpful in deciding if the doctors need to do a better job documenting your condition.

[janiedelite]

Potsgirl gave good advice. I want to emphasize that you need a lawyer. It seems those with lawyers have a better chance of getting approved. You will probably get turned down twice and then have to request a hearing with a social security judge; that is where most people are approved. A lawyer will also be helpful in deciding if the doctors need to do a better job documenting your condition.

I did have a lawyer through my long-term disability insurer, but the lawyer said I pretty much had done all the work myself and that I did a good job of it. It did help that I'd been to Mayo and been diagnosed at a well-known health care facility. But the mayo neurologist doesn't help folks get SSDI. I have a great GP who actually filled out the paperwork. She is NOT a POTS specialist, but wanted to coordinate my care and help me in any way she could. These are the additional factors that helped me get approved:

- Visits to multiple specialists over a couple of years while I was trying to get diagnosed. I included all of their office notes because they all accurately corroborated my symptoms. Also, the judge said that when she read all of these doc's notes, it was very evident that I was a compliant, believable patient.

- I kept a personal diary of my symptoms for nearly 2 years, as well as a diary of all my dr's appointments and phonecalls. All of this was submitted to SSDI (over 30 pages)

- I started volunteering at my husband's school and kept a diary of what I was able to do, how often I needed to rest, how I felt during/after, was I able to transport myself, etc. This showed that I was trying to function to the maximum of my ability. You don't have to do this, but it was helpful for me.

- I submitted several articles written by Mayo dr's or Dr. Grubb documenting the affect POTS has on our quality of life and our ability to work. These really helped the judge see how I felt every day.

- I included a 2-page document titled "A Day in My Life" in which I described how I live a day with POTS. I start with how I feel when I first wake up and chronologically list my daily activities until I go to bed (and I even explain how POTS affects my sleep). I try to explain my level of function in simple terms so that if the reader had no understanding of POTS, they would come away with an understanding of how it affects our day-to-day abilities. I also update this and submit it each time I'm getting re-evaluated for my long-term disability. It has become the most helpful tool to explain my functional ability.

I submitted probably 200+ pages of dr's notes, tests, hospital visits, personal records, scholarly articles, etc. The judge read all of these prior to the hearing, and approved me immediately. Let me emphasize, you CANNOT have enough documentation. Try to include objective data (dr's records, tests proving your diagnosis, scholarly articles) and subjective data (detailed personal descriptions of your disabilities). That way, those who evaluate your case will have proof of your diagnosis and a real understanding of how it affects you.

There are many great threads on this forum from others who successfully won SSDI with POTS. It was hard work getting together all this proof of my disability, but it was worth it! The only reason I had to have a hearing was because during the first two appeals, the long-term disability company never sent all of my records. When I was assigned a hearing, the lawyer helped make sure all of my records were sent in.

[McBlonde]

Thank you all for such very good advice!

The irony of it all! I have my BS in health information and MA in organizational development and prior to getting sick, I was in hospital administration. Since developing new symptoms in August, it's affected my cognitive abilities. Even starting this thread and writing a response takes me forever. It's like I have lost my higher thinking abilities to put everything together. (See, that's an example.... I can't think of what that's called ) Even trying to keep up with a diary of daily symptoms is next to impossible. It's as if I have ADD now. I can't explain it.

Anyway, me actually putting together what I know intellectually what I need for SSD is not possible. I have talked to one lawyer in Dallas whose approach is to start with you at the application level. He believes that if you fill the application out knowing all the rules, you have a much higher rate to get approved on the first try.

So, what he needs to do that, is the documentation of an official POTS diagnosis. That's why I was thinking of Vanderbilt. It's near enough. Then, the local guy will follow what they recommend, if that's how they do it.

BTW, I was in hospital admin when I got sick. Out of no where a severe fatigue hit me. It took me until 2003 to find the right doctor, a neuro-endocrinologist, who discovered my pituitary problems. I should have filed then, but it felt like it would be giving up on getting better.......admitting that I would never get better. I know better now. You can receive disability and if you have a miracle recovery, you have the option of trying to work before giving up your disability. Anyway, all that didn't happen.

Starting the meds in 2003, getting alot of rest. Using what energy I had sparingly, I tried to go back to work just as a receptionist. I was only able to handle that for about 8 months. Then I tried a completely sedentary desk job where I was on the phone all day, but I just couldn't handle it and I got too sick again. In 2007, I tried again at a doctor's office. I really thought I was okay, but I wasn't. Because of my background, they wanted me to be their administrator of their surgery center. And oh how happy I was about that...... An opportunity to be myself again!!! What a unrealistic view of my own health and ability to cope. in 3 months I was skin and bones. I had lost over 30 lbs. I was emotional. I needed to be at work first, but NO MATTER WHAT I did, I couldn't drag myself in before 9:30 and even at that time it felt like it was the middle of the night to me. I was so nauseated, too. Finally, on the verge of collapse, I stepped down and just did the accounting. Coming in at 10:00, working through lunch and doing absolutely nothing else but resting in bed when I got home and on the weekends. I did that until August.

In August my cognitive issues were so bad that I got lost going home from work a couple of times. I just would be driving home and look up and suddenly not know where I was. It only last a few moments, but it was scary. At the same time, I developed really awful headaches and nausea that only were relieved by lying down flat. The doctors that I worked for decided to outsource accounting and they urged me to file for disability. As employers, they didn't think I was well enough to work and will support that in writing which I think should help.

Turns out, the headaches and nausea happened when I step out of bed. My BP drops to nothing (the Florinef I was taking for that from 2003 is no longer working) and my heart rate shoots up 40 or 50 points. When the doctor told me the new issues were caused from POTS, I had never heard of it. I could not believe my eyes when I saw the symptoms list. These are the symptoms that I have from the list:

Fatigue

Fainting or nearly fainting

Nausea

Headache

Generalized weakness

Heart Palpitations

Tremulousness

Postprandial hypotension

Feeling of difficulty in taking a deep breath

Loss of sweating/now sweating alot

Cognitive impairment

Cold hands

Irritable bowel syndrome

Some Blurred Vision

unrefreshing sleep and an increased need for sleep

Myofascial pain (like fibromyalgia pain)

Tachycardia

Exercise intolerance

Clamminess

Anxiety

Loss of appetite

Feeling full quickly

Flushing

Intolerance to cold

Feeling cold all over

Insomnia ? can?t go to sleep until 3 or 4

low blood volume

Hyperventilation

Aching neck and shoulders

Noise hypersensitivity

Some loss of equilibrium

Muscle aches

Polydipsia

Weight loss/gain

Feeling detached from surroundings

I suspect my POTS has something to do with the hypopituitary, low renin and low aldosterone I have.

My thought was that a summarization of the above from Vandy would help.

Sorry this is so long!!! But whenever I feel like I can type I have to do it then 'cause I don't know when the next time will be.

Thanks so much for listening!

[potsgirl]

If your heart rate zooms up and your blood pressure drops really low, you may want to consider the possibility that you have orthostatic intolerance and possibly NMH. Normally your BP shouldn't drop too much when you stand up from a sitting/lying position. If you're a fainter too, like me, I'd explore that possibility. You can find info on the home page here, at MayoClinic.com, and other good sites.

Good luck with everything, and take as much help as you can get! I couldn't have done all of the documentation alone, and make sure your lawyer only charges up to 25% IF you WIN your case. Otherwise, you should just be paying for some copying and mailing fees.

Cheers,

Jana

[McBlonde]

Thanks everybody for all your advice! I really, really appreciate it!!!

The strangest thing just happened. I know when my blood pressure drops because I get nauseated.

Today was a beautiful warm sunny day here, so my husband and I walked down our driveway and back a couple of times. All of a sudden, I felt nauseated, so we came in and I took my BP and HR. My HR was 132 and my BP had dropped so low it wouldn't register. So......I laid down and my BP came back up to 109/60.

Isn't that weird? I had no idea that my BP was falling like that....not only when I go from lying to standing, but also when I am just walk along. No wonder I have a headache and am nauseated so much if my BP is shooting up and down so dramatically.

[Brye]

I succeeded with my disability claim the 1st time around without a paid lawyer or an autonomic specialist. I had a lawyer friend who wrote up a questionaire for my physician to fill out with info he know from past experience was critical to making a decision. I submitted that with my initial forms at my interview. I didn't gather my med records I just signed a release. The only thing I submitted was the questionaire and my TTT results. I was shocked when it was approved the 1st try. I think I still have a copy of the form if you're interested. I had a deal with my lawyer friend that if it was denied I would hire him for the appeal and I was thrilled when it was approved!! I think he was a little shocked even because he said it's more difficult if you're younger.

I also had frequent documentation of failed treatments by numerous Doctors as well as frequent hospital records and ER trips and I think that helped too. I had return to work notes as well that were denied by my employer due to I think liability concerns. My favorite was "may return to work provide a safe environment should syncope occur" Denied ... what would that be a rubber room perhaps?

Hope your request goes smoothly! I'm so thankful I had such an easy time especially after seeing some of the hardships so many go through.

Brye

[janelle]

Potsgirl gave good advice. I want to emphasize that you need a lawyer. It seems those with lawyers have a better chance of getting approved. You will probably get turned down twice and then have to request a hearing with a social security judge; that is where most people are approved. A lawyer will also be helpful in deciding if the doctors need to do a better job documenting your condition.

I did have a lawyer through my long-term disability insurer, but the lawyer said I pretty much had done all the work myself and that I did a good job of it. It did help that I'd been to Mayo and been diagnosed at a well-known health care facility. But the mayo neurologist doesn't help folks get SSDI. I have a great GP who actually filled out the paperwork. She is NOT a POTS specialist, but wanted to coordinate my care and help me in any way she could. These are the additional factors that helped me get approved:

- Visits to multiple specialists over a couple of years while I was trying to get diagnosed. I included all of their office notes because they all accurately corroborated my symptoms. Also, the judge said that when she read all of these doc's notes, it was very evident that I was a compliant, believable patient.

- I kept a personal diary of my symptoms for nearly 2 years, as well as a diary of all my dr's appointments and phonecalls. All of this was submitted to SSDI (over 30 pages)

- I started volunteering at my husband's school and kept a diary of what I was able to do, how often I needed to rest, how I felt during/after, was I able to transport myself, etc. This showed that I was trying to function to the maximum of my ability. You don't have to do this, but it was helpful for me.

- I submitted several articles written by Mayo dr's or Dr. Grubb documenting the affect POTS has on our quality of life and our ability to work. These really helped the judge see how I felt every day.

- I included a 2-page document titled "A Day in My Life" in which I described how I live a day with POTS. I start with how I feel when I first wake up and chronologically list my daily activities until I go to bed (and I even explain how POTS affects my sleep). I try to explain my level of function in simple terms so that if the reader had no understanding of POTS, they would come away with an understanding of how it affects our day-to-day abilities. I also update this and submit it each time I'm getting re-evaluated for my long-term disability. It has become the most helpful tool to explain my functional ability.

I submitted probably 200+ pages of dr's notes, tests, hospital visits, personal records, scholarly articles, etc. The judge read all of these prior to the hearing, and approved me immediately. Let me emphasize, you CANNOT have enough documentation. Try to include objective data (dr's records, tests proving your diagnosis, scholarly articles) and subjective data (detailed personal descriptions of your disabilities). That way, those who evaluate your case will have proof of your diagnosis and a real understanding of how it affects you.

There are many great threads on this forum from others who successfully won SSDI with POTS. It was hard work getting together all this proof of my disability, but it was worth it! The only reason I had to have a hearing was because during the first two appeals, the long-term disability company never sent all of my records. When I was assigned a hearing, the lawyer helped make sure all of my records were sent in.

Hi, What articles from mayo did you submit? I'd love a link or point in the right direction as to get access to them so i could print and submit with my claim, it would help a great deal also for my family to read.

Thanks

[McBlonde]

I just thought of one good thing about POTS!! It's not invisible like CFS. You actually have objective tests and measurements that you can see. i.e. my husband can see the HR of 150 or the BP of 68/48. I am very lucky. He has really stepped up to the plate and taken over so much.