disability process

[mountain girl]

I am currently going through the process of applying for disability due to my limitations from cfs & POTS.

My doctor just retired 10/01/2017. He was kind enough to write a letter for me explaining how cfs and pots affects patients, as well as his credentials and experience of 30 plus year working with these types of patients before it was "widely known". He said he was sorry he did not have any doctor he felt good about recommending for me, and gave me his cell number so a new doctor could speak with him if they would like to. I was able to get an appointment for February 2018 with an internal medicine doctor who is accepting new patients, but February is the soonest appointment. The receptionist said he sees cfs patients, but that is all I really know. People seems to know more about cfs than pots. Many doctors in my area are not accepting new patients, even though I have insurance through my husband.

So, my problem is, I have been denied disability at the first level, and have been working with the legal assistant of a lawyer who does 50% disability cases, but has not officially agreed to take my case. She first read 6 months of medical records, then requested the previous 6 months, but still no real answer. The legal assistant  said to be sure and notify her if I received a denial letter, which I did, but their office does not return my call, and today is a week.

I contacted another lawyer, and they sent a pack of paperwork for my doctor to complete. I am considering asking my doctor who retired, because who else would say what I can and cannot do when I will be seeing a new doctor, which I have not found yet. The paperwork is at least 10 pages long and asks the doctor what I can and cannot do physically and mentally, and most doctors do not want to complete that, unless they truly understand the limitations of cfs and pots. (They said this is so the lawyer does not have to read all the medical records)

I was seen once at Hunter Hopkins Clinic in Charlotte NC I think in 2010. (Dr. Laura Black and Dr. Charles Lapp) They do not accept insurance, and when they submitted it after I had paid a high cost, I think 500-1000 dollars, my insurance did not cover anything, so needless to say I could not go back as it was too costly, especially with travel and overnight lodging. They did seem to know a lot about pots and cfs and were willing to help with disability, but at the time, I decided to keep working. Has anyone used these doctors to help with disability?

I am trying to take things step by step, but it is overwhelming at times trying to find a doctor who will support me through this process now that my doctor has retired, and trying to find a lawyer who is willing to talk to me and take my case.

Sorry this is so long, but any suggestions from anyone who has had experience with this is appreciated. Thanks for listening:) Mostly, how did you find a doctor to work with you through disability, and how did you find a lawyer to talk with you and take your case?

[Clb75]

I went through the disability process a few years ago. I would definitely stay on top of the lawyer because there is a time limit for appealing after your denial. They can close the case if it’s not done on time. I think it’s a good idea to ask your retired doctor if they would fill out the papers since they saw you last and are most familiar with your case. It will help to have an appointment scheduled with a new doctor because you need to show you are receiving consistent care. 

There are some law firms that specialize in disability cases but operate more like a factory, they get your information, send forms out etc but won’t let you talk to or meet with the actual lawyer. I went with one who met with me in person. He did a quick screening over the phone to see if he thought he could help me, then met with me from there. If you’re not getting calls back, I would keep searching. I wouldn’t try to go through the process without legal help because it’s too complicated. 

It’s a stressful process, I hope you find the support you need.

[Guest KiminOrlando]

Yes, use your old doctor. I used Hill and Ponton as my attorney and they are in many states. I had to get a court date and have my disability granted by a judge- that is how hard it was for me to get disability. I would not recommend filling out any paperwork yourself. Hill and Ponton handled EVERYTHING. 

Do search for disability on this site and look up this topic. Several of us have written about it in the past. One wrong thing on a form can change everything and the clock is ticking the whole time, even while you are waiting for them to decide. It took 4 years for me.

This is a very stressful time, but it can be done. Social Security Disability doesn't understand dysautonomia, so we aren't on the list of diseases to approve.

Good luck. 

Kim

[Gracefulprincess]

Here's my experience with going through the process of disability, I was diagnosed with both Neurocardiogenic Syncope and POTS.  I was referred to a cardiologist by a neurologist I was seeing for other health conditions.  And once I saw the cardiologist, we went through all the testing to find out what was going on which took awhile. And then started different medicines to see what would help me. After about a year, the medicines weren't helping and I was in bad shape and had to be admitted to the hospital for a few days. And there, the doctor told me two things, one I couldn't drive anymore because it would be too dangerous and two I had to stop working and go on disability. So with that doctor's help and my cardiologist's help, I applied for disability. It was not easy and there was a lot of red tape to go through. We eventually had to get my Congressman involved to speed up the process. But I was approved.

So my advice to you is to have patience because it could take awhile.  I had a lot of help from my family, my mom was the one who helped contact my congressman. So if you haven't considered getting your Congressman or woman involved, I would seriously think about it. Just keep fighting till you get approved!  I hope you will find the right people to help you through this.

Becca

[Roxy]

Not to be a downer, but I am on year 6 1/2 and at the second hearing with a judge for social security disability. I have very good lawyers and wonderful doctors helping, but because dysautonomia is not up front and in your face in the book social security uses it can take a while. It also depends on which state you are applying from some are quick (shorter waiting periods for answers) and who is looking at your paperwork it is arbitrary the answer you get from person to person. It is kind of like the same process and issues faced going through the VA system. Good luck