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Applying for Disability

Have you applied for disability? What was the process like for you?

We have information on the ins and outs of applying for disability in our resources section:

  1. RRR. That’s not “Reading, ‘riting and ‘rithmetic”. If you have MS (or any disease/accident injury that may cause you to apply for disability) I believe the way to a positive outcome is RRR - RESEARCH, RESEARCH, RESEARCH! I read everything I could find on every MS Site I could find. Then I read everything I could find on non-MS Sites that had anything to do with MS. I continued reading: first person articles about why a person failed in getting Disability or fought to eventually get it, articles written by doctors angered by their patients getting denied, articles written by past and present employees of different disability systems on why applicants are denied. One even went so far as to say (not exact words) that they had to have a way to get through the stack of applications therefore it often came down to the first mistake they found. Zip Code left off. They’d use the “Claim Denied” stamp. Sad fact is that the majority of denied applicants do not resubmit their claim. If your initial application is accepted you will be informed that they will now investigate it. You will need to sign forms allowing them to contact your doctors, etc. It will take time to gather everything. Doctors forget to follow through. Mail gets lost. Disability employees are overworked. A year, maybe two down the road you may, or may not get a positive response. So I cannot stress enough how very important it is to research, in general and research more specifically to your specific case. If you haven’t already, don’t delay in getting a copy of EVERY VISIT to EVERY DOCTOR you’ve ever seen wherein you’ve shared any symptom you’ve had that the doctor might have written a note in your file about the possibility of MS. I had some odd stuff happen

    1. There is one more thought to add to your suggestions regarding applying for SSDI: GET A LAWYER that specializes in SSDI policies and procedures!!!!! This is an absolute must. I was denied twice and when I reached the hearing level, I knew right then and there I needed a lawyer. Had I obtained one at the beginning of the process, I probably would have been awarded it much sooner. There are no retainer fees involved. Their pay is taken out of your back pay up to a certain percentage once you win your case.
      The filing for SSDI is a very complex procedure; requiring a lot of paperwork on SSA's special forms to be completed by your doctors, family members, caregivers and possibly co-workers/managers/supervisors from your employer.
      Here are some sources to find one in your area:
      1. Your doctor (where I got mine)
      2. The National Multiple Sclerosis Society
      3. A google search specifying SSDI lawyers
      4. Possible social media platforms that specialize in multiple sclerosis
      These lawyers have the knowledge and expertise in assisting the applicant in filing for their SSDI. They will let you know what paperwork needs to be completed and will submit these on your behalf as well as file for appeals in the event of a denial. In addition, they will advise you on SSA's policies of filing for SSDI for a patient with multiple sclerosis.
      It took me two years from application date to when I got awarded my SSDI.

    2. Hi . This is some great advice and information. Thanks for chiming in. I am glad you finally got approved. Wishing you the best. - Lori (Team Member)

  2. Dog-gone-it… I had some odd stuff happening. My GP sent me to a neurologist but symptoms had disappeared. No tests done. HOWEVER, the neurologist’s report to my GP stated that should symptoms return I should be tested for MS. Four years later. More symptoms. GP referral to second neurologist. Symptoms disappear but he writes letter to GP echoing first neurologist. At no time did my GP or either neurologist mention MS to me yet all three had notes in my chart that indicated that I should be tested for it. Another four years, another set of symptoms and another neurologist; one who scheduled a MRI and confirmed that I had Multiple Sclerosis. After doing my RRR I postponed applying for disability until I, MYSELF, contacted every doctor I’d ever seen and asked for complete copies of my records. Twenty-four years of records. My GP’s office staff started at the beginning of my file and pulled every page that had the words neurologist, MS or demyelination. A referring doctor also has copies of lab reports, MRI’s, other testing, physical therapy, and names of each facility and physician, therapist or technician you’ve seen. When I was confident that I had everything - then I completed the application. Before submitting it I had two non-related, unemotional, unbiased people read through the application. I sent three copies of everything (in one large envelope) by certified, signature required, receipt return mail on a Monday morning. Within three weeks I received a letter that my case was accepted and being reviewed. Three weeks later I received approval. Sure RRR took time. But it made me ready to do the letters, follow up phone calls stressing my situation, completing the application, compiling the packets and finally mailing them. Receiving approval in six weeks was worth every second of learning through RRR.

    1. You amaze me, ! The amount of work might seem overwhelming to people reading this, but I would imagine it is far less overwhelming than getting denied over and over and over again. This is fantastic advice for anyone applying for disability. Thank you for sharing your experience. Best of all wishes! - Lori (Team Member)

  3. I just saw this post. I applied for S.S.D.I. many years ago, and got through on the first attempt. It was very hard to to get it even then. Here's a paste from my file with tips, and a recent video from an attorney who specializes in these cases which is terrific.

    Long-term Disability Benefits—What to know and do.
    (Excerpt from upcoming 2nd Edition of Managing MS, 10/2021)

    When I’m asked, “What should I do if I’m thinking about applying for long-term disability benefits?” these are my suggestions:

    • Document everything—symptoms, flare-ups, medications/treatments taken, all doctors/other professional help visits, etc.— and be specific (when, what, frequency, duration, why, results/non-results, side effects…).

    • Schedule at least two visits to your neurologist/year. Consider seeing a professional therapist for depression and other emotional problems you may be experiencing; consult with them about prescriptions for an antidepressant, anxiety, or sleep.

    • Make sure you have a good, supportive neurologist—my neurologist knew exactly what to write and explain specifically on required paperwork to get me approved.

    • When completing disability documents, include the following points.

     In addition to the gait, vision, bladder/bowel, sleep, fatigue and emotional problems, you need to be specific with pain, coordination, weakness and balance problems.
     Show that you are unable to stand or sit more than an hour or two at a time; and it’s necessary to lie down at least every two hours.
     Explain that not only are you unable to do your current job, but any job. (Like selling movie tickets!)
     Detail how quickly you become incapacitated and how nauseated and sleepy you get from medication/treatments you are on.

    • Once you get on disability benefits, stay on them. The unpredictability of a MS flare-up and the extent and duration of its impact can happen overnight.

    Note: To obtain information about Social Security Disability, you can call your local social security office, or go online at

    Video - Social Security Disability Law Updates for the MS Community MS News and Views

    1. - you mention that "once you get disability benefits, stay on them." Is this a yearly thing that one has to keep qualifying each year?

    2. colette4 & Debbie Petrina,
      As a person who is currently on SSDI, may I provide some insight on the phrase: "Is this a yearly thing that one has to keep qualifying each year?"
      Yes, a person who is on SSDI will undergo a process to qualify for these benefits on a periodic basis to determine if their SSDI will remain to be paid. This process is called a Continuing Disability Review (CDR) and by law, SSA must conduct these based on the condition that the person qualified for SSDI in the first place. SSA places each beneficiary in one of three categories:
      1. Medical Improvement Expected (MIE); This is for cases with individuals who have a serious injury or medical condition that full recovery is anticipated but the duration of it will last longer than 12 months. Beneficiaries in this category will receive notice of a CDR approximately every 6 to 18 months.
      2. Medical Improvement Possible (MIP); apparently this is the category that has the largest beneficiary population. Individuals in this category receives notice of a CDR approximately every 3 years.
      3. Medical Improvement not Expected (MINE); applicants who get placed in this category have a medical condition or serious injury that will not ever improve for them to be able to return to the work force in a substantial gainful manner. These people in this category will receive notice of a CDR approximately every 5 to 7 years.
      Once a person wins their SSDI case; they will receive a "Notice of Award", and this is where the beneficiary will be able to find the category that they were placed in.
      Those of us with MS know that our condition is lifelong; and not expected to improve for us to return to the work force, if we can prove that our MS is severe enough that we can no longer work. I am such a person; once I got awarded my SSDI, I was placed in the Medical Improvement not Expected category. This was because after 15 years of having MS; I found that I could not work in a substantial gainful manner.
      Please note: I obtained the above information regarding the different SSA SSDI categories from their website; for I am just a person with MS and no relation to being a lawyer or any such person with expertise in this area who had worked in a similar profession.

  4. I have been turned down in the past for disability. Now, I'm 72, still suffer from worsening MS, as well as spinal scoliosis. I haven't been able to walk or stand for years, but there's something about already being at the top for SS and can't get more.

    1. I am sure your needs can become expensive, , especially since you can't walk. Have you ever consulted with a lawyer who specializes in disability claims? Warmly, Lori (Team Member)

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