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Living with Polyneuropathy CIDP, GBS, & CMT

Disability

Has anyone ever been to a disability hearing in front of an Administrative Judge in reference to GBS?

Take a lawyer.

I have had to rely on a loved one for some years because of the bladder and of late, kidney infections due to getting GBS when I was 12. Since my GBS event was when I was 12 I feel like they would give me a lot of "red tape" but I truly have been disabled looking back over the years. It kept me from engaging in lot of healthy activities when I was younger and now has made me lose out on a lot of good jobs. Employers do not like you having to use the restroom all the time nor do they appreciate one who misses work a lot due to kidney infections. I have been thinking I actually need the resources that come from disabililty benefits. I applied once was turned down and havn't bothered with it since. What I've done instead is to transition from a meat eater of 44 years to a vegan and I feel sooo much better and am showing signs of reversing the bladder and kidney issues. I like the road I'm on. I stay positive! Oh and a blender or extractor of some sort really helps get the veggies ingested easier and mixed with fruit or fruit juice is Tasty! Here's to our health!

I’m in the process of trying to get disability now also. I have applied and been denied so I’m having to appeal. I have an attorney handling it for me because I didn’t know how to do it. If you get anymore information on this I would really appreciate it if you would pass it on to me. GBS so far has been somewhat difficult for me to prove as a reason for disability but at this time there is no way I could work. I’m about 1 1/2 years into GBS and still have to take it day by day depending on how I feel that day. One day I’m feeling pretty good and the next I’ll be totally drained and with no energy and pain running through my legs. Still working with doctors on this. And worst of all it has effected my marriage and it looks like my husband is going to ask me for a divorce, and the stress alone from that wears me out. Keep your chin up and keep on going!!

Thanks




mdolich said:

I think a lot has to do with the severity of ones GBS. I was considered a severe case because of the sudden onset and what happened in ICU. In ICU I became paralyzed from the neck down within 48 hrs. after being admitted, was comatose, and on a ventilator. So I think a lot had to do with the hospitals records on me. I was also wheelchair bound after getting out of the hospital. It took another eight months before I was able to walk using a cane.

Social security had me go to one of their doctors to confirm my disability, which he also agreed that I was totally disabled. The lady at the social security that take care of my claim & filing was very supportive. It’s hard to find someone like her at social security administration, guess I was very fortunate. Keep appealing your case, don’t give up. I have heard from some other GBS patients where it takes around three times before it is approved. Look into getting a disability lawyer.

Good Luck, "Stay Strong and keep a Positive Attitude.

I initially filed myself and eventually had to hire an attorney to represent me. After over 1 year I am still numb from the waist down and elbows down. I walk with a cane because I have chronic ataxia. I cannot drive yet because I can't feel the difference in the peddles. Social security sent me to their person who did not even identify himself and he said I could work.I was due to have a hearing and than decided that I could not wait the additional 18 months in addition to the year I had already waited.My husband and I were ready to lose everything! I wrote to Governor Rick Scott of Florida and he sent my letter to the head of the disability entitlement program. She reviewed my case and told me that I should never have been turned down from the beginning. She contacted the judge who I eventually would have seen and he agreed. I am now on social security disability with a 3 year review.

Congratulations! Prayers being sent for you and for all who have suffered a chronic illnesses



daley54 said:

I initially filed myself and eventually had to hire an attorney to represent me. After over 1 year I am still numb from the waist down and elbows down. I walk with a cane because I have chronic ataxia. I cannot drive yet because I can’t feel the difference in the peddles. Social security sent me to their person who did not even identify himself and he said I could work.I was due to have a hearing and than decided that I could not wait the additional 18 months in addition to the year I had already waited.My husband and I were ready to lose everything! I wrote to Governor Rick Scott of Florida and he sent my letter to the head of the disability entitlement program. She reviewed my case and told me that I should never have been turned down from the beginning. She contacted the judge who I eventually would have seen and he agreed. I am now on social security disability with a 3 year review.

I didn't have to go before a judge. I guess you are talking about Social Security? They just reviewed my medical records and I got mine

I was denied once when I applied, then a second time after my lawyer applied. We appealed it and went to court. The judge was a very nice man and with all my medical records, I was approved. I have to go back in front of the judge this November to see if it will be extended or cut down or off completely. They do not count the first 5 months of your disability when it comes to making back payments to you. So if you became disabled 12 months ago, they only see it as 7 months. Medicare kicks in after two years, but add the 5 months they do not count. So it’s 29 months before that starts. A lot of hoops to jump through, so let a lawyer do that for you. They are limited to how much they receive from you. 25% or $6000(it might be $5000)what ever is the lowest. After approval, it took me 3 months to get first check and another 3 months to receive the back checks. Do not give up hope. GBS isn’t on the list for qualifying disabilities to receive SSD. Only because the CDC lists it as a temporary condition that heals in less then a year. We all know that is not true for all. I have way to much information to put on here, so if you have any questions feel free to ask.
A little bit about me now. My case was considered severe acute, and my paralysis stopped just above the elbows. It took me about a year to learn to walk again with the aid of a walker, cane and AFO’s. I currently only use AFO’s if I’m going to be walking for an extended period of time. I was diagnosed back in October 2010. I do work part time again, but struggle with 10 to 15 hours a week. Fatigue and pain are my constant companion. But I’m never going to give up trying. Never giving up I think is the key for all of us. Keep your head up and your heart strong. Once again, if you have any questions feel free to ask.

David

Thanks so much David!! May you continue to get better!




das4u said:

I was denied once when I applied, then a second time after my lawyer applied. We appealed it and went to court. The judge was a very nice man and with all my medical records, I was approved. I have to go back in front of the judge this November to see if it will be extended or cut down or off completely. They do not count the first 5 months of your disability when it comes to making back payments to you. So if you became disabled 12 months ago, they only see it as 7 months. Medicare kicks in after two years, but add the 5 months they do not count. So it’s 29 months before that starts. A lot of hoops to jump through, so let a lawyer do that for you. They are limited to how much they receive from you. 25% or $6000(it might be $5000)what ever is the lowest. After approval, it took me 3 months to get first check and another 3 months to receive the back checks. Do not give up hope. GBS isn’t on the list for qualifying disabilities to receive SSD. Only because the CDC lists it as a temporary condition that heals in less then a year. We all know that is not true for all. I have way to much information to put on here, so if you have any questions feel free to ask.
A little bit about me now. My case was considered severe acute, and my paralysis stopped just above the elbows. It took me about a year to learn to walk again with the aid of a walker, cane and AFO’s. I currently only use AFO’s if I’m going to be walking for an extended period of time. I was diagnosed back in October 2010. I do work part time again, but struggle with 10 to 15 hours a week. Fatigue and pain are my constant companion. But I’m never going to give up trying. Never giving up I think is the key for all of us. Keep your head up and your heart strong. Once again, if you have any questions feel free to ask.



David

Hi Scott. Yes I had to go to court to get my disability. I hired an attorney as well. I got GBS in Dec 2007 and had to be wheeled into the court room in a wheel chair. They took one look at me and asked why this case was brought to them. I asked the same thing. When you go to the hearing just make sure you or your lawyer has all of the medical documentation about your case. It will take some time, but have faith because you are not alone!!!

I filed for disability and got approved the first time out. I gave a detailed description of the condition I was in and how it would affect my abilities to perform my duties which I also gave a detailed description of. HOWEVER.....as I waited to hear from the SSA on whether or not I was approved, I continued to heal and get better. After about 4 months passed, I decided to try going back to work to see if I could do it. I didn't want to stay home and collect disability if I could go back to work. After about 2 weeks in, I heard from my SSA case mgr telling me I was approved and was retro-active from the time I was in the hospital. When I told her I went back to work, she told me to return the checks. LOL! But I'm happy. I'm back at work.

It’s the year 2019 and because of GBS my back has changed on me. I’ve been diagnosed with Degenerative Disk Disease. I have lost 5 jobs this year. Certain tasks leave me completely immobile just laying on my left side in excruciating pain for 4-5 days before I can walk rather shuffle my feet again. Then bam I can’t walk again for days! I’m so scared this last time. I cried and cried for days. Being immobile brings me back to when I was paralyzed from the neck down on a ventilator in the ICU! I finally have an appointment with a primary care giver after x-rays were taken at the e r showing my vertabrae very very twisted. Been to e r many times in the last two years now. I am going to file Again and again until I am approved. I’ve had it with not being able to walk for 4-5 days then walking hunched over because it hurts so bad and my spine is so stiff. I’ve had it with losing job after job. I’ve had it with crying and crying and I’ve had it with the horrible pain!!!