Your experiences applying for disability?

I'm hearing horror stories about applying for disability. I'm meeting with my neuro in 2 weeks to discuss further but would love to hear some of your experiences, especially things that facilitated the process or snags you encountered. My MS symptoms are mostly invisible, but they DO cause concern for my job performance. TIA!

38 Replies

  • Hi erash l actually got on disability because of my back and then losing the feeling in my feet. In NY state it seems to be the standard to deny you the 1st time around so that you have to contest it. It was very frustrating and took forever! I hope it goes better for you :)

  • Hello erash, if you're applying for your job make sure you have your neurologist write everything down that's wrong and the symptoms you may be experiencing ( whether it shows or not). They will not dispute a licensed physician. They might question how disable you are, but stick to your guns and don't settle for anything.

    Now if you filling for Medicare it's a little more involved. Some suggest you get a lawyer, either way they put you through a lot just to get what's yours anyway.

    A good resource for that situation is to contact your local MS Society. They have someone that can direct you in the right direction.

    I retired from my job with 100% disability (because of the type of job I was doing), and I have Medicare disability. Getting Medicare was a headache. They sent me to a private neurologist just to prove I have MS. My doctor's diagnosis wasn't good enough. I see why people get a lawyer to represent them during this process.

    I wish you luck on whatever decision you make.

  • Hi Erash, as you know I don't live in the states, so me telling you my experience with getting disability, will do you no good, apart from maybe have a laugh, but I want you to know I am behind you with pray for your situation, hope all turns out well for you, cheers Jimeka

  • You came to the right spot for opinions. Hi this is Shelly, I had to get a lawyer to help me. I tried doing it on my own but I kept getting the run around from the SSD. I fought it, with a lawyer, for over a year. It finally went through August 2016. It is a long battle, stick to your guns and don't give up. If you want to start on your own its okay, but if it becomes too much, get help. The stress is not good for us. It takes awhile to get it resolved but it is worth the wait. If possible get a disability letter from your neurologist so you can file it with SSD. Also your primary doctor and physical therapy just in case you need those too. I did.

    Again, if you need help ask. That was my problem, I thought I could do it on my own, but having a lawyer took some of my stress away. Call around and talk to lawyers around you to see whichever one is best for you.

    We are here if you need to talk or vent. I vent quite often here. People here don't judge or put you down for talking about anything/everything.

    Good luck


  • I'm wondering, for those who have fought this battle, does SSD give you reasons? Harder to fight if you don't know what you are fighting against. And thank you all for the valuable insights!

  • They gave me no reason. It's NY state and they make money the longer they can hang on to it. But like Shelly said get a lawyer to help you. It's worth it in the end.

  • Not sure how Fla compares to NY but I can't imagine they are better here as our governor refused Medicaid improvements. Isn't SSDI federal though?

  • Your right, but they still make money off the interest. I mean think about it... the longer they can hang on to "our" money, the more money they make... Thats my thinking anyway. :)

  • I was denied by the SSD but my lawyer said it's normal procedure for them. The SSD want you to give up the fight, don't. You are entitled to the financial assistance.

    Reasons: They needed paperwork I already sent in. They wanted more documentation from my doctors, which they already had. They look for anything and everything to make you give up, don't.

  • If you're talking about SSDI, all you need to do is to apply on line. It will first take you through the application for SSI, and then to the SSDI. Just fill it out and send it in. I got approved within the first 2 weeks. However, my husband, who applied in 2005 after he suffered a stroke and could no longer work, had to go through 2 levels of appeal before he got his. A lot of it depends on whose desk your application lands. A lot more of it depends on your symptoms. Fatigue is a big factor. But if you get denied, find a lawyer that specializes in representing client trying to get SSD. Many of them are former Social Security Administration Administrative Law Judges or know most of them. They usually take their fee out of your retroactive SSDI payment. Good luck.

  • The other comments are all correct as well. Usually is SOP for SSA to deny you on the first try, but that's not always true. Whatever happens, don't get discouraged. You paid for this coverage throughout your working life. Fight until you get it. And while you're at it, please click on the link below to get to the petition which if Congress heeds it will save you a lot of heartache when you qualify for Medicare 24 mos. after you qualify for Medicare.

  • Hello. I wish you the best. I was diagnosed April of 2014. Thought I could handle it. Had to close my business & in 2015. Her we are today & I was rejected twice. I got a lawyer & now waiting for the court date. Was told by November 2017. I really hope you get on you 1st try!

  • So sorry but thank you for sharing this. Seems like it's really like gambling, hit or miss....

  • Hi, erash.

    I was one of the fortunate few to not only get my SSD through the first time, but I did it all myself. A friend who had gotten hers a few months earlier told me to answer each question VERY thoroughly, describing how each symptom affected your daily life. Take your time in filling out the forms.

    My neuro is known for being very proactive for their patients, so I'm sure that helped. The only extra medical exam I was asked to get was an eye exam to determine if there was any nerve damage there. I believe they even covered that exam..

    I'd say they thorough and precise documentation is a major factor. And be sure to let your medical staff know that you're filing for disability.

  • My neuro is very proactive too. I will hope for the best. Thanks for the advice and so glad you didn't have to struggle too much with getting disability.

  • I totally agree with Eleyne92 on being as thorough with your answers! It may seem like you are repeating yourself but that is okay because some of the questions seem repetitive. I filed online and took me awhile to finally finished the application but you can save and come back to it when you are ready. I got copies of my medical records from my doctors so I could see what they wrote and put some of the info in my application. I was lucky to have a good neuro and family doctor that I got approved on the first try (2006). I had to wait 2 years to get Medicare which I was lucky because my longer term disability from my employer just ran out when I was approved to get Medicare. Best of luck to you erash.

  • I feel ridiculous asking, but do I need Medicare if I'm insured under my spouses health policy?

  • It depends on how much your husband's insurance covers your different medical situations. If his insurance covers 100% of all your dr visits, medications, etc then no, you don't need Medicare. Otherwise you may want to get Medicare and then his insurance can pick up what Medicare doesn't cover as Medicare usually covers 50 - 80 percent of most things.

    Hope this helps,


  • Very helpful, thanks!

  • I applied all on my own. My husband helped me fill out all the questions since there are so many, and I have difficulty with my hands. We answered every question, and my husband said.......let them get it touch with you if they want more detailed answers. I gave them info of my general practitioner, neurologist, and orthopedist ( I have advanced arthritis as well). I filed about 5 years after my MS dx, when I could no longer work even part time. A call was set up weeks later, and I received approval several weeks after that. I honestly had no trouble. Guess I was lucky.

  • I applied for Federal Disability in March 2015. My Neurologist wrote me a letter declaring that I was (am) permanently disabled. I filled out the paperwork and made an appointment with the Social Security Office. The day of my appointment I had terrible fatigue and my leg was not functioning well. We took with us the diagnosis of MSfrom my neurologist plus a copy of the MRI report from the radiologist which stated that I had several lesions on the spine and the brain, consistent with a diagnosis Oscar MS. I was approved in five weeks. I think the deciding factor was that I could no longer do my job or a similar one due to my MS. There are counslers that will give you a phone call and prep you on the disability process. I believe they are lawyers that want to take your case if you are rejected. I believe to

    He counsler we talked to was a referral from the MS Society.

  • Great information Robert. Thank you

  • Disability is definitely a mixed bag... I know of people who got it after the first shot and others who STILL don't have it (and should)!

    I applied years ago, sometime after my diagnosis and, of course, was denied. Then years later, after being told that they were taking extreme fatigue (one of my major problems) into consideration, I applied again - but this time I got a lawyer (handicapped - I believe with MS).

    My application was denied and, after MANY tests were done/doctors seen/forms filled out and questions answered, it was FINALLY approved! But when my lawyer tried to tie it in with my first application, Social Security told him they'd had no previous application from me! I'd moved from one side of the US to the other since the initial application and managed to lose whatever paperwork I'd had.

    My lawyer tried his best to find out where it might have gone, to no avail. End result: instead of linking to the original application and receiving a decent disability because of my former earnings, I get the absolute minimum possible! Hard not to keep kicking myself when I think of what I could have received if I'd kept all that paperwork!

    Lesson learned... get any and all forms, tests, doctors' notes, etc. and KEEP A FILE! And stick with it. Expect to be denied the first time, but hang in there!

    Good luck! Let us know how it goes!

    Anne :-)

  • Hi Anne. Thank you for the helpful insights. I'm certainly getting good tips from everyone's experience.

  • I obtained a lawyer (online) who was able to get my case approved in 4 months or so. I didn't get denied the first time, and I never even actually met my lawyer. My state, at the time, was MD. God worked it out with the help of Eric Shore. I'm not even sure what SSA paid him... There is an agreement that SS lawyers have with the government. I pray this helps.


  • I'm sure it will help. Thank you

  • Anytime!

  • Can you apply for disability if you are working part time? I am from SC and work about 4 hours a day but by the time I come home I am good for nothing. I have 2 kids in college and can't wait 2 or more years to not have income while I'm fighting to get it.

  • Curious @ this too

  • There is a site ALLSUP which will help you for free check it out.

  • Ty!

  • I too have been looking into going on disability. I have a friend who works for a disability lawyer and she set up a phone meeting for me with him. His advise to me was that when I am ready to go on disability to first go on long term disability from my employer. Because they will usually pay the lawyer fee so it doesn't have to come out of your back disability pay. Also he told me to not work at all, period, no matter how much I needed the money. He said to apply for food stamps and welfare first because if you work even 1 hour a week SSI assumes that you can work more. Not good. Another thing is that your age will determine how hard it is to get SSI. The younger you are the more you have to prove. Because I am inmy mid fifties he figures I will get approved the first time. You do have to be VERY thorough in answering the questions and sometimes a letter from your previous employer stating you had to leave because you were not able to meet the demands and requirements of the job because of your disability, even with accomodations will speed the process up.

    My employer has been great in accomodating my MS so that I can still work. They actually let me work from home so I don't have to commute. That worked really well for the first year and half but for about the last 9 months my production is really slowing down because of my fatigue and the frequency of brain fog that I have. I highly recommend for those of you still working to apply for FMLA. If it weren't for that I would have lost my job long ago and no one would have hired me.

    Hope this helps someone.

  • Very valuable information. Thank you! You mention SSI. My understanding is that this is different, criteria different from SSDI.

  • Sorry, I meant SSDI. My brain was getting pretty tired when I wrote that.

  • No problem I'm just learning the differences b/w the words, ssdi and SSI, so waned to be sure

  • my experience was smooth! I did all the research they needed ahead of time. They will want all medical records, so I got them all. Of course your neuro must say that he agrees/supports with this decision. then did the paperwork along with my husband filling out his form. I sent / submitted everything at once. That will speed the up process so the disability people don't havento take the time to get it. hope that helps! just get your neuro on board!

  • Thank you my neuro is on board 😌

  • great ! Then do all the leg work for the disability people and wait for your call to see the state dr. hoops to jump through! Good luck!

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