Anyone in US receiving SSDI ??

Rodstew · 09-07-2009, 11:22 AM

Hi. As in my previous posts I have been diagnosed with PLS about a year. I have a lot of pain and about all the symptoms I see described in here. I have now been turned down for the second time for SSDI. They stated that they could see I could not do my current job or any other job I have been trained for. They did say that they felt I could do something less demanding. My background is retail management and construction with a HS education.

I am curious if anyone has been successful in receiving SSDI and what you feel might have been the deciding factor. Also how long it took to receive it. Just curious as to how it went for anyone else. This is very frustrating and I am sure others would find this info helpful also.

It is very depressing going through this as it is bad enough to be in this shape and it seems that a lot of people have no idea what we go through on a daily basis.

Thanks to all on this group for all the support you give and the positive thoughts each day. It really helps to hear from others going throough this.

Thanks for any input!!
Rod

crystalkk · 09-07-2009, 12:21 PM

One of the possibilities is to get a lawyer, or if your nuero can reword your dx to "UMN dominant ALS" even though you have PLS as a dx.
It would definately go through. I believe there are a few members on here that there nuero did it automatically so they wouldn't have a problem with disability. If you talk to your dr I'm sure he or she would understand. DId you appeal it?

icecreamlady · 09-08-2009, 11:48 AM

Rod-

I am in the process of trying to get SSDI. I am waiting for an answer. The lady at the SS office told me that a big part is your age. I am 45, which is kinda of young for SSDI. It's always about money. If I do get turned down, I will get a lawyer to handle the rest. They get a percentage of your check... It is aggrevating.. I am just waiting to see what happens.. I think asking your doctor to say that you are UMN dominant ALS is a great idea to do prior to getting a lawyer... That way you will also get benefits quick..

I think all PLS people are UMN dominant ALS. It makes more sense then to seperate the diseases. If you look at people with MS, it affects people in many different ways.

I never understood SSDI. How can they find you unable to work, but believe you are able to get health insurence for two years..That is screwed up...

Are swollowing problems and weakness in chest muscles a upper or lower neuron problem?

Thanks...Lora

remember the Bible states "Don't worry" 366 times.....

bobcloudindy · 09-08-2009, 05:29 PM

I have just been approved for ssi disability? and I was lucky enough to find a friend to help,I did it all online and was approved fast,you have to have a 6 month waiting period[mandated by law] but it can be waived if you have a life threatening disease, like als ect. it also helps to have access to a fax machine, a lot faster than playing mail tag, worked for me, hope this helps. good luck

Rodstew · 09-09-2009, 10:52 AM

Thanks bob. Why would you say you were approved so quickly. I filed the same way.

hopingforcure · 09-09-2009, 03:13 PM

Crystal gave great advice, see if the doctor will give you a UMN dominant ALS dx. then you will be fast tracked. Talk to your neuro office about the issue, if you are at a ALS clinic the nurses and doctors should be familiar with the disability issue and should be able to help you out. I also received the back pay for the time I could not work. Chest problems and such can be upper or lower motor neuron. Feel free to PM me if I can help any of you out.

Just J · 09-11-2009, 11:53 AM

Thanks everyone for this post and great tips! I agree condition should be listed UMN dominant ALS. We may be going through this soon with my husband as his mobility has declined about 20% in just the past 8 weeks. He currently works from home and definately would not be able to work outside the home now...he can barely stand for 3 minutes.

Rodstew · 09-12-2009, 11:44 AM

Just wondering?? I have been turned down the second time and have appealed for a review with a judge on the PLS dx. This will take from 12 to 24 months is what I was told. If the neuro changed the dx to UMN dominant ALS would I be able to file another claim. If so it would be reviewed quickly for compassionate review and approval. What do all of you think?

Connie · 09-12-2009, 02:34 PM

I was turned down the first time I applied because I was still working from home with the understanding with my company that I would retire at the first of the year. So, I re-applied and with the help of my wife who is an RN, I was approved. I think the key is the application and answering the questions with a good knowledge base. Many people hire attorneys to help them with the process. To many of the questions, my wife was very blunt. When asked on the application why I thought I deserved SSDI my wife documented that I had a terminal illness and was unable to work in any capacity due to fatigue and much description of my symptoms. ANother help was from the documentation in my medical records from various neurologists and physicians at the Forbes-Norris ALS/NMD Researc center in San Francisco. It took about six months to get my first check.

bpayton · 10-23-2009, 11:57 AM

I was approved on first try and had the decision in 4 months. I had to wait the 5 month deferal for 1st check and didn't get medicare until 2 years from 1st check. Billy

Rodstew · 10-24-2009, 08:55 AM

bpayton,
was the disibility for PLS and why do you think you were approved so quickly?

bpayton · 10-24-2009, 09:47 AM

Yes it was for PLS I called Social Security and told them of my dx and they made me a appointment to come in. I took the paperwork my neuro had filled out for my employer. May be it was what neuro said in his report. I didn't get medicare for 2 years because it was PLS not ALS. Billy

serenade · 10-24-2009, 12:40 PM

I left work June 24th. Applied for SSDI in later part of Aug and was approved in 3 weeks. Medicare will be in effect Dec 1. However my first check will not arrive till Jan 27, 2010. They send the check based on your birth date mine is the 21st. So pretty much it takes 7 months in Pa.

Judith · 11-04-2009, 05:54 PM

I was dx with PLS. I applied online. I had every visit documented, from onset to dx, with doctors phone numbers and the outcome of each visit. I was approved within 3 months. I had to wait 2 years to receive Medicare. I asked someone at SS what would I need to do if the dx is changed to ALS; she said I would have to re-submit another application.

piperl4 · 11-26-2009, 05:50 PM

I just found out the other day that after working for over 40 years streight I had to take off the past 2 years because of the ALS. I did not file a claim as I had heard you would be turned down. No I got a letter saying I am no inelgible for SSI disability because I missed my 2 last qtrs. Talk about unfair, I can't get disability because I was to sick to work. I am going to call my account on Monday and ask him about filing 2 prior years amended tax returns where I just pay in the mininum SSI. I am one year away from SSI anyway so the gal was pretty rude and said whats the problem you will be elgible in a year. I may not be here in a year.