Hello I have had MS for 20 years already. I received disability almost 5 years ago. They have recently been sending me questions what I can and can't do. Who helps me and can I work again. The answer is No. I feel like shit daily. I get tired and worn out as you all know. I wish I could work. I had a great job so I get paid alright but not as much as I used to make. They new paperwork said they set up an interview with one of their doctors who I have never met for a mental and cognitive test.
Have you ever heard of this?
I have a neurologist that fills out the paperwork. Why are they doing this? I will never be able ro work. They are stressing me out. I will be calling them tomorrow to ask questions. Has this ever happened to anyone on social security disability?
Thanks for your input
Jenny
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jkdavid99
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If it's SSDI, I was warned that about every 5 years I would have to go through a re-approval process. They seem to be of the belief that no disability is permanent and that we'll get better as we age. For the first year, I got regular recorded phone calls from them urging me to get a job and go back to work.
I know. Like it's not bad enough that we truly can't work ever again, they make it their life's work to harass us and make us feel guilty and afraid. The Disability program has been badly managed for years. The "doctors" aren't really doctors, the appointments are held at the most inconvenient locations, and the caseworkers have no medical knowledge whatsoever.
It sounds like you have a supportive neurologist, so keep leaning on him as much as possible. For the mandatory testing, just bite the bullet and figure out a way to get there. it's my understanding that if you don't go, you'll be seen as non-compliant and can be stripped of your Disability designation.
Thank you. I'll go but it will be very hard to keep my mouth shut. Yeah I called social security and they said it was their doctor. Probably doesn't know much about MS. It seems like such a game. If they take my disability away. I'll go back to work for a day and be sick and have to start over. So frustrating
This should just be a formality. If your neuro has already filled out the paperwork that you haven't gotten better (duh!), that should count heavily in your favor. You didn't have to do this before you were approved? When I had mine, they already had my medical reports and my doctors' comments. I was clearly having problems walking, moving, and dealing with their cognitive tests. When you go, don't lie, but don't try too hard, either. Let them see the worst side of your abilities.
If it's any comfort, the "tests" they gave me were incredibly stupid. I had to walk across a 6' cubicle, then try to stand on my tiptoes. She asked a few questions about how often I used a cane, and that was about it for the physical. The mental test had me count backwards by threes, name our current President, and try to remember 3 items she'd told me several minutes before. I spent no more than 15 minutes with each one, although there was nearly an hour's wait in between the two. I also had the distinct impression that two of the people in the waiting room were just there to observe us while we waited.
I agree totally with NorasMom. It’s worse than pulling teeth. I went to their doctors and got denied. I called a lawyer. He said I may even have to pay them! BS! I’m still fighting. This sucks and is very aggravating! All I do is laugh at them. It’s my defense mechanism. They have no idea how much this sucks. They should hope they never know! As if this crap wasn’t enough to deal with. They have to be thorns in our side!
they are trying to weed out the people who don't need it but are relying on a free ride. fair but when they see what we go through they should back off. I would be lost if i couldn't work from home. it's such a part of my identity and also what i do most of the day.
I totally understand that. It makes me so mad that people lie and freeload when ive worked hard for so long with a great job that I loved. Taken away from me because of MS. And yes when you lose your identity it is super hard. I literally took me 4 years to halfway get over it. I still miss what I did.
Yep, I had to do this to get the UK's version, DLA or PIP. I mistakenly filled it out using good days AND bad days, so I had to contest thier decision when they came back with "I'm not eligible for PIP." Fill the questions out for on your bad days only and play on the people's heartstrings. Don't be afraid to cry if you're calling them up. My sister did this when getting carers allowance for my nephew. He has a tracheostomy, is now 1 1/2, and when she cried on the call to them, begging for more hours of help, her carer hours went from 8hrs to 20hrs.
I'm sorry you have to get go through this but yes, it it just a formality. In the US, MS has been fast tracked so they know what we go through. Like someone said don't lie but give them your worst days. I actually told them it took me 3 days to complete the paperwork. I saw their doctor and he agreed and said that I was done. I think my age helped at the time I was 57. Please don't stress yourself out it only hurts you more.
Hello all, first post newbie. Thank you for sharing comments...so helpful. Also sorry to hear so many struggles. I'm curious about "MS being fast-tracked" in the U.S. What might you mean by that? Sound hopeful (?)I've been denied for SSDI 2x & am working with an attorney for appeal. Selling off belongings trying to scrape by until the ALJ hearing. I'm sick with worry I'll be denied again because I "look fine" yet, SO many aspects of my life are affected by M.S. I'm 56 & praying for a miracle. If there are any encouraging words or info on how best to navigate the coming months until the hearing...I'd be grateful. Best to all here.
I was also denied twice and was waiting for a hearing in front of a judge. I got a call saying I had been approved. Luckily I was given an advocate through my job and that definitely helped. That being said I think you'll be approved now that you have an attorney. But it sucks and sorry you have to go through that. My suggestion would be to keep a daily journal of your days. Write everything down. The judge will need to know how long it takes you to recoup on regular chores. For example, After doing laundry I am tired for 2 solid days. That is definitely true for me. Good luck and I wish you the best. MS sucks and we should get a pass on all the extra crap we have to deal with.
Fast track means MS is processed quickly through the SSDI system. I was told by a lawyer who sat on the deterning board in PA to file it myself and I should have no problem. It also depends on what type of work you do. I was in Early Childhood Education and an administrator, the disability doctor looked at my legs and said, you're done. I was a bit nervous because he was more disabled than I was. A month later I was approved. I guess it also depends on where you live.
I've been through all that too. Just tell them your truth. The tests seem really stupid (& are In my opinion). The Dr will know you have MS & that it is a progressive disease & you won't be getting any better without a cure or a miracle. So stay calm & be you.🙏🙏🙏
Haven't heard anything like this myself but they do keep sending me reminders that I can still work part time on disability, but I haven't been on as long so don't know if maybe something they do at a certain point
I would also suggest you contact your congressman/woman and ask for help. SSDI is federal and they are there to help. I suspect that once they are involved SS will lighten up a bit. Good luck.
It seems they are checking everyone. I'm having to get a passport for my Russia-born son to show SS that he is a US citizen. (He as adopted when he was 2.) Until I show it to them, he won't be receiving his SSI. This will take months. It would have been nice to have notice
I had to go to one of their docs for cognitive testing and that's what I think got me approved. Upon arrival I had to fill out paperwork of information that they should have (and may have) had already. That was frustrating as I could not remember all of the dates etc. They were just calling one person back after another. Of course they would like everyone to go back to work because non-disabled people are not working now either. I figure that is their problem. Good luck and just go through the motions.
I forgot about the paperwork! Luckily, my daughter was with me, because I could barely hold the pen let alone remember what happened 30 years ago. And yes, it was all stuff that they should have had already. When they called me back, the "doctor" said she had my full medical history and my doctor's notes, so WTH?!
Jenny, I’m sorry you are going through this. Thank you for sharing it though because as someone who was approved a little over a year ago it is eye opening (and alarming) to learn what is coming. Good luck & best wishes.
Hi!! I was denied once and had an advocate. I had to go their testing site but I didn’t do well on the vision test right out of the box. The doctor was really nice and she asked me to do something that I don’t even do in therapy and her response was “ if you don’t do it in therapy, I don’t want you doing it here. It’s obvious you can’t work. We’re finished here.” I was notified of my approval about 10 days later. I did have to be in a wheelchair because I can barely walk so that might have helped. I have to do extremely annoying paperwork every year for my long term disability that pays a pittance each month but it’s better than nothing. I was a floral designer for 30 years and my employer took wonderful care of me. I went from working a full time job to being basically an invalid in 18 months. No real symptoms for years but when they hit it was like a freight train. Hopefully your issue can be resolved without too much more stress.
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sorry about that
Filing for disability 
