Good morning FND family,
I am reaching out to see if anyone has had any success acquiring Disability approval with Social Security Administration.
I also welcome any ideas for treatment in the Los Angeles area.
Thank you so much for any reply!!
Keep fighting warriors!!
Meg💞
Hi Mom1314, I live in Florida and have been on social security disability since 2015. It was a fairly long process to receive it. Application process, doctors notes, physical exam by THEIR doctor (which will be assigned to you) and a physical from PT, OT and ST to determine what you are actually capable of (again they assign where to have it done in your area). My neuro and primary doctors didnt put FND as diagnosis but used all my symptoms individually. Ex. weakness, right side deficits, memory loss, unstable lab values ect. If denied at first (most are) keep applying. Best of luck 🍀
I just received SSA disability. I hired an attorney to help me through this process. It took 19 months and one appeal to get it. When it finally went through they had 4000+ pages of medical documentation from my primary care, neurologist, neurosurgeon, PT, OT, ST, psychologist, neuroopthamologist, acupuncturist, gastroenterologist and pain specialist as well as the notes from my hospitalizations and Emergency Department visits. My attorney made sure that I knew not to miss any appointments. It is a hard and frustrating process but keep at it.
Thank you for replying with your story. I will continue to work with my documentation and use it the best I can. All my best.
Hi Mom! My story is similar to Riley’s above. My FND Was likely present prior to my brain cancer and surgery, but they definitely were 5000 pages of medical records.
I am in Pennsylvania, I’m sure where in the states you are.
My first application was on my own, and I do recommend that you at least have a social worker that looks at your paperwork before you submit it, if not a disability lawyer. And I interviewed three different disability lawyers before picking the one that I wanted to work with.
Under federal law, any lawyer or third-party that works with you on your behalf takes the same percentage. The law is 25% or $6000, which ever is lower.
I applied on my own first, had two denials, and then hired a lawyer.
I also enlisted support from my member of Congress. Every congressional office has a liaison working there that assistance matters dealing with Social Security and Medicare. Reach out to your Congressman local office, and they will send you a release of information form to fill out. And this allows them to check in with SSA on your behalf. Every four months, and with my 3rd denial, I emailed the contact in my office, and I shortly there after got a letter from SSA that was written to the congressman and CCing me.
Somehow I got bumped up to the Administrative Judge Hearing. without having to go through the timely process of seeing doctors SAA wanted me to see 👍
So I do think between hiring the lawyer, and utilizing my congress persons office, it was a huge benefit to me.
My date of last employment was
2/2/20, My date of submitting application was somewhere around April 1, 2020. My date of approval was somewhere around August 2021. Then my first check was October 2021, and backpay was December 2021.
Hope this helps you and any others reading it and still in the process
Thank you, Julie! I am happy you were successful. What a great story to hear about your congressman. My mom has urged me to do this, and after hearing from you, I will look up how to reach mine. I really appreciate your response and sharing this with me. I will post an an update when I have one.
My new hearing (after two years!) is set in October.
Please pray, sing to the moon, talk to our rocks, whatever our spirits do to connect and ask the universe 🤓for our gifts to receive after offering so much. Thank you!!
Yes, I was able to get SSDI. I ended up getting a lawyer to help me. They take a percentage of your back pay, so it’s best to get one early on. That will reduce how much you have to pay them! It was very helpful to have someone that knew the process. I just gave them what they asked for, then didn’t have to do anything else.
In the end, they looked at a combination of things, it wasn’t purely FND that did it. I also have a rheumatic disease and anxiety/depression. And it took about a year.
Remember to answer all of the questions with how you function on your worst day and if you’re in between levels on something, answer with the worse level. That’s opposite of how we act in real life, so it’s hard to do, but that’s what you have to do.
Best of luck!
Thank you so much for this reply. You tend to advocate for FND so much, at times you may forget there could many other issues to push. I have been treated for Bipolar & mood disorders since I was a kid, fibromyalgia, and on.
I had a representative for my first hearing and it was awful. Then represented myself during my US District case. I feel I did a better job advocating for myself. It’s very hard to trust people!!! Doctors, lawyers, judges, government officials!!! Thanks again
Hello Mom 1314, I have been dealing with FND since Dec of 2008. Actually getting doctors to understand what was going on took quite some time here in Utah back then. I dealt with voice loss, uncontrollable movements from pretty much head to toe, non epileptic AND epileptic seizures, restless legs, myoclonic jerks and so much more. Life went from great to horrible pretty quickly. I was finally sent on short term leave from work, which I was told should help back in 2014. Short term turned to almost losing my job because of stupid errors on my works disability end, to finally accepting long term. Then losing my job completely. I applied for ssdi and it took about 3 years, Dr's, therapists, many trips to NIH to be a guinea pig, and getting an attorney before I was accepted in about 2017. Thanks to medications, finding a therapist and neuro that actually believed in me instead of pushing me off telling me it's all in my head. I have made a HUGE turn in life. I am back to work, not 100 % better. But I would say in the 90% better. And I was just told recently that SSDI has deemed me no longer disabled and has taken me off. Don't give up. Keep fighting!!! Best of luck to you. Cheryl
Thank you, Cheryl! Wow, what a journey. Thank you for sharing. It really encourages me to keep going. I hope for a turnaround. I think it’s so hard to convince a judge that: We are disabled but if you give us the right help - medical & financial - we may be able to get back to a more stable life.
All my best! Thank you
I just was to thank you so much for the replies so far: dbar126, Riley-Roo, Adventure-Nana, cgarff
I read posts, but this is my first time posting. It’s scary at times. So thank you for helping me feel ‘not alone’. And sharing your stories. 💗
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