Before I got MS I worked for 20 years with no breaks in employment. Afterward, I could not keep a job. Now, the longest I have held a job is 6 months; the shortest, 3 weeks.
I applied for disability and was denied. Instead of appealing, I just tried even harder to get jobs (which I kept failing at). I was later told by others in-the-know that the denial of disability could be because I stopped taking my DMTs.
The logic is, if you agreed to take DMTs you would get better, and you would be able to work. The reason you need disability is not because you have an incurable illness, it’s because you refuse treatment.
Putting the whole issue of personal choice aside for the moment (pharmaceutical treatments vs diet etc) has anyone else been told that they must agree to take prescribed drugs to be approved for disability? Or suffer the resulting poverty?
For now I am refusing to inject myself. So I may be eating ramen noodles for a very long time.
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HensTooth
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Hi RoyceNewton yes, absolutely. I think government employees and judges are the ones who may not understand that DMTs only promise to stop the disease from getting any worse (and it’s up for debate at what percentage they are actually keeping that promise). MS is so unlike any other condition that it’s hard for non-affected people to wrap their head around!
Good morning HensTooth, it's Fancy. You have touched on so many topics here we'll start with not looking at any DMTs. EMTs will not sure you but they are designed to stop the progression of your disease and thereby allow you to catch your breath and learn to live with the disability you have. Hopefully if you start them early enough your disability will be very light and it will stay that way for quite a long time. There are many options with various DMTs, several that now are designed to enter the body orally. To go over the edge you need to find you a neurologist and pick that neurologist brain and allow that neurologist to pick your brain to decide what's best for your stage of the disease.
Now going on to you not being able to hold onto jobs. I would tell you to go ahead and do some research with the Americans with Disability Act referred to as ADA which was passed into law in 1990. It provides that employers must make reasonable accommodations to individuals with disability to allow them to work. If you would get on a DMT that would stabilize your disease and then find a company that will understand what the American with Disability Act entails and makes accommodations for you to work efficiently then Employment would not be at all that unreasonable.
Disability with Uncle Sam should not be based on your personal choices but on your physical symptoms and the type of disease you have. As far as I understand disability officials cannot ask what DMTs you are on, or you have have refused to be on. I had to apply for disability three times and was denied all three times. The 4th time I hired a lawyer and we were able to go before a judge and I did receive disability then. Even then, my disabìkity was pushed back for an additional 6 months. Getting disability isn't always easy, but make sure you are persistent with your inquiries and do everything on time. If all of that fails, the system is set up that you have to hire an attorney to make the disability guidelines you are suffering from seem authentic and for disability to go through. I don't truly believe that's fair, but it seems to be the norm and I think it feels sometimes as if it's a conspiracy to involve the attorneys pay additional fees before disability if you is given out. I think my arguments were just as valid as my attorneys and I had to point out several different things that the attorney missed but I still had to have the attorney.
Sorry this was so rambling but I hope parts of it helped. It's speaking to you and if you have any additional questions please feel free to reply back and I'll do my best to help where possible. Until we speak again take care and remember that together we are stronger! Fancy.
Hi Fancy1959 and thank you for your long and thorough reply!
I know the “DMTs-or-not” question is a big separate discussion... I left out that I did go to a good neurologist, and he was willing to try different treatments, but the fact is, after monitoring my symptoms carefully for almost a year, I looked at my logs and concluded I was much worse when I was on all the meds, than before I started!
That could have just been the progression of the disease, but nevertheless I took a huge gamble and stopped all my meds cold turkey. At first it was a nightmare and I thought I’d be put away in the loony bin. (My own doctor told my husband to admit me to psych rehab until I stabilized!) But then as everything cleared out of my system, a dramatic improvement began.
Maybe it was more to do with “quitting my job” of being a half-time slave to the treatment of this disease. (It truly took up to 20 hours a week.) Or maybe it was psychological, and I was no longer self-identifying as a victim. Maybe it was lowering my stress and avoiding all inflammatory foods. I may never know the real reason I felt so much better.
You make very good points about the ADA. My kind question in response is: Have you tried it in practice?? These legal protections sound lovely and make us feel safe... But putting them into use is Hell on earth.
I won’t describe what I went thru because I wouldn’t want to make you suffer thru the retelling! Suffice it to say, finding an attorney who will take your case on contingency, suffering through months of stressful depositions, losing all your friends who tell you not to rock the boat, then “winning” and having to fight your own attorneys to get a small percentage of your settlement... Yay! Way to go, ADA!! I would NEVER go thru that again.
Lastly (phew! this is long!) the disability folks. They have ALL your records in front of them. They know if you refused your meds or didn’t keep your appointments or scored too high on cognitive tests. They don’t need to ask.
You wrote, “Disability with Uncle Sam should not be based on your personal choices but on your physical symptoms and the type of disease you have.” Amen!! That is beautifully stated! I agree.
I guess as you have suggested, I need an attorney. ☹️ I’m sorry for all the many times you had to go thru denials, and I agree that being forced to involve attorneys feels like a giant back-scratching scheme! Thanks again Fancy for all your advice.
I had my company accommodate my needs for my MS symptoms or related symptoms. I had received a desk chair that helped my spine pain, my office furniture was modified or I was given a room where my furniture was more ergonomically correct, I received a key board that was ergonomically correct, they changed the bathroom door so it there was a button to control access ..... at a post office that has handicap parking but I couldn’t get into the building so they changed the access ... including my church, some of my doctors offices since some rent space from a building with many different companies, or they get handicap parking or let me park closer to .....
I find if you don’t stand up for your rights or do not exercise them, you are the person who is effected by it the most. You do not get belligerent or nasty about your request. But I had to consistently had to ask or find an alternate solution. l even change doctor, or job location (especially when driving became more challenging at the end of the day). I did have people who allowed me to work from home when it was too hot or during the summer. And I did not take advantage of the situation. I worked 40-60 hour weeks. Even work from home while getting IV steroids, (e.g., get on conference call for 4 hour work meeting). I travelled for work and I made sure flight times were more accommodating for me. I did over time or worked on weekends. Some times I skewed my hours so the weather was less bothersome (9 am - 6 pm). I am not a morning person. When I had harder time to get the job done with all the accommodations or me being creative and coming up with solutions; I applied for disability. I was blessed that I received it the first time. Unbelievably, they even gave back two years of disability money because they stated I should have applied sooner.
I didn’t apply for disability immediately when I stopped working because the reduced stress made me feel better. I had to applied because my family needed the income (mainly to pay property taxes in NJ in USA) and my medical expenses. I helped take care of my children’s needs; medical costs, co-pays ... , save for college, help pay for extracurricular activities, clothing (boys grow fast), school supplies ... My children received disability benefits too.
As a African American woman from my upbringing, faith ... I learned from family which battles to fight and how/when to exercise my rights. Otherwise I would have not been in honor/AP classes, get treated fairly, .... from child to adult hood. If conditions are suitable, you have nothing to lose if you don’t ask, they will say “no or yes” and sometimes you can ask for an explanation. You should no the risks and benefits making requests; assess your situation. Within the same company I had to make official complaints when management violates my rights (3 times). They made claims that my behavior was due to my MS. But they could not prove it. My performance/behavior at work was never an issue; terrible accusations due to MS/race/sex. Some people really had problems me working with MS, especially if I became sick at work due to worsening symptoms such as unable to walk, unable to use my hands, debilitating fatigue.
However, I met so many kind, nice, wonderful, caring people. And remained friends with many. And I did have great experiences and received promotions or special recognition for my work.
The DMTs did help me to work 40-60 hour weeks, deal with stress, lessen the number of relapses, and deal with progression. At times, I had to educate people about MS and individuality. But you will have to talk to your physician. Since 2nd relapse, I take medication to deal with my changing symptoms. Even we re-tried some DMT, or tried new ones and non-pharmaceutical solutions, exercise, yoga, gardening... even tried medical marijuana or vitamin supplements, change in diet, managing stress better ... and my family, friends ... helped me. I did not do many things without help. It is hard to ask at times; it can be very humbling or uncomfortable at times. And don’t judge or make assumptions so fast; patience, kindness, forbearance .. goes a long way in every situation.
Since you know what is in your medical records: you better explain them and how you deal with your disability on daily basis. And what happens when your symptoms worsen or you have a relapse. You need to educate them about you as a person with MS, your situation ... when filing for disability benefits. I even told them that completing out my form was stressful and fatiguing; causing me worsening spasms in my hands. Explain the details as if they did not know anything about the disease and impact on me/family or interaction/impact in employment and community. I was truthful. I didn’t embellish.
Good luck with your situation. I hope you get the help and solutions you need or deserve.
Have you contacted a Vocational Rehab office? They are trained to help people with medical, mental or physical disabilities to get a job. Just a thought.
The social security in the US provides a web site for different ways to get help for people with a disability to work if they do/don’t receive disability benefits. Like finding a Vocational Rehab Agency or and some other programs Ticket to Work.
When I applied for SSDI, I was denied on the first round and denied again on appeal. I then hired an attorney and was approved when I went before a judge. During this 2 1/2 year course, my disease worsened and I fit their criteria, which I think was more important than the attorney. The best that I remember, the SSDI criteria for MS, 1) not longer working in the same occupation (even at reduced hours) 2) Two affected limbs ( having to use a cane counted as an arm and a leg) and 3) a cognitive impairment, which is demonstrated by cognitive testing. For me, pain and fatigue caused me to leave my testing early and resulted in the psyche lady stating that I could not "persist and maintain", which qualified as a cognitive deficit. If you can remain the whole 6 to 8 hours, then SS thinks that you can do a desk jog.
Hope this helps. PM me if you need any more details.
In my experience, yes you have to meet all 3 requirements. The MS society had a lot of info on this. I don't remember what things qualify as a cognitive impairment.
Iona60 thank you for the specifics, that does help a lot! That is so frustrating that during the delay for disability, you were getting worse and worse!
I think you’re right, there are very specific criteria we must meet and it’s nearly a mathematical equation that either you arrive at a certain disability score, or you don’t. From your description I can see where I failed.
I was evaluated at a neuropsychologist’s office for cognitive decline. Unfortunately, I was “stupid” in the wrong way! 😝
I am a people-pleaser by nature and so I tried VERY hard on all the tests. I got exhausted early, but I mustered my will, and pressed on to finish it all. I faked a pleasant demeanor to be polite, when inside I was confused and irritable. By the end I was falling over from fatigue but did what I always do, held onto furniture and steadied myself on walls to seem as normal as possible. That’s how I get along in the world, to fit in socially, keep jobs, etc. It’s second nature.
Right after the appointment, I collapsed from fatigue and was in bed for 2 days to recover from the mental output.
When we got the report back, it stated that I performed very well in most areas, successfully finished the day’s tests (albeit slowly and with breaks), and noted that I only stumbled once while walking thru a doorway. It even quoted me saying that “when I’m exhausted I am able to adapt” or something of that nature.
So in other words, making my very best efforts was the worst thing I could have done. They didn’t see me collapse in the parking lot the minute I left. They weren’t in bed with me for those 2 days afterward.
They think I can do a desk job like THAT every day...? HA! I’d be a puddle on the floor on Day 2...
But that’s exactly what I proved to them. Ugh! ...I truly AM cognitively challenged! 😂
I am so sorry that you "passed" your cognitive evaluation. Is there any chance that you could do it again? If enough time has passed, it could be evidence of your MS worsening.
I didn't have cognitive issues but got my ssdi on the fist try. I put down everything I couldn't do and was afraid to do. Like putting things in the oven. I am to afraid to put things in the oven because my blance is so bad I am afraid I will fall into the oven and be burned. I have bowel and bladder issues and told them of embarrassing things that have happened in public. I had to swallow my pride and let them know what my life was really like. It is hard to do. But you are right in this situation you can't hide anything. They have to see the truth. They aren't there everyday to see your struggles so you have to allow them to see without feeling embarrassed. I know I try to act "normal" in front of people I don't know but in this case you can't. Keep trying, don't give up. They would like for you to do that. Just remember you worked for that money and payed in. You deserve to get it. Most people do have to appeal more than once but then when approved you get back pay. That helps alot. I hope the best for you.
I think from what I have read getting a lawyer is a requirement. National MS Society would recommend one in your area who specializes in disability or even MS. Most applicants always get denied disability the first time, so please don't be discouraged. Good luck!
You should appeal a lot of people get denied on their first time around. My application was denied because they told me I didn’t live where actually live even though they were always mailing me something to fill out
Get an attorney. Also talk to Jamie Hall he works with MSAA I will dm u his information
Don’t give up plus just cuz ur on disability doesn’t me u can’t work u can but there’s restrictions on how much u
this so irritates me.you better stay sharp to navigate all this P.I.A. stuff we go through.I guess I never thought for one minute what we all had to go through,let alone this disease!best to you,makes wanna scream urgghh!
I had a doctor who was terrific at advocating on my behalf. He was the only doctor who found the cause of my symptoms and made the diagnosis of MS that other doctors missed. He was also great at documenting my visits and complaints. His records were strong in supporting my disability case.
Unfortunately he was also fond of suggesting myriad medications, tests, products, and devices. I declined a number of additional and expensive diagnostic exams and genetic blood testing that he ordered. I refused to buy some ointments and appliances I didn’t feel would help me. I turned down a second “walking EEG” and a third evoked potentials test.
These were all expensive items that I would have had to buy out-of-pocket, or things my insurance company would have to pay for, and I didn’t feel they were helpful or necessary.
My doctor “fired me” the day after I refused to take more time off work to spend 3 days with wires glued to my scalp to look for epileptic seizures I knew I wasn’t having.
His nurse lectured me about finding another neurologist fast, since it was so important to have a doctor following my case. I never did. Once bitten, twice shy, I guess.
Now I wonder if I should have kissed my doctor’s buns a little more than I did! Maybe it was insurance fraud, but maybe I also would have won my disability by now.
Wow, this is disturbing and troubling to hear! Please don't give -up the fight and proceed with the appeal process. It doesn't seem fair to make anyone or force someone to take medication and block monetary benefits we earned hostage! I know the appeal process is gruelling, but it's your money. If your area has Legal Aid a Disability Law Project similiar to PA that would a great resource. Praying and wishes you the best.
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Going on long term disability
What was your first DMT?
Wish me luck!
MSAA Online Focus Groups - Day 7
Has anyone gone off their DMTs?
