I was diagnosed with CIDP last Ocober and receive IVIG infusions monthly. I have deteriorated to the point of having to use a walker and leave my job for all the common symptoms. I am in the process of final stages of application and approval for disability benefits. Any advice and/or experiences to help me through this process correctly the first time?
I applied and got denied. In my experience you need a lawyer to win this one. Our disease is VERY rare & the government doesn’t recognize it. If you can’t prove permanent nerve damage then they will dick you around. I wish you the best of luck. Getting a lawyer will help big time with this.
Heather
I have been sick since March of 2011 we didn’t know what it was until here recently. I applied for disability in Feb. of this year and I just got my Approval yesterday. I didn’t have to appeal or anything. The key is to make sure your initial application is filled out with as many details as you can give and let your neurologist know you are applying. In my case mine suggested I apply. He was crucial in my approval, he keeps detailed office visit notes & was detailed in his reports to them as to what I can and can’t do. They do recognize this even though its rare, it’s just a matter of how it’s presented to them or how they want to see the painted picture.
I have yet to start treatment. I was just diagnosed on Aug. 28th. But last July, I had a major neurological episode. I applied for Social Security on Aug. 5th. I was approved on Oct. 18th. I had my first check the next day. My neurologist was the only doctor they received records from and there wasn't that many. I also saw a SS dr. He saw what I could and could not do. The visit went well. Whatever my neurologist wrote in my records is the reason I got my benefits so quickly.
I applied for SSDI in March and found out last week that "a decision was made" on my disability. However, the person I was on the phone with at SS was not able to give me the decision over the phone - I have to wait for notification via snail mail. She said that would take 30-60 days for me to receive notification. Grrrrr.
I applied for SSDI in March and found out last week that "a decision was made" on my disability. However, the person I was on the phone with at SS was not able to give me the decision over the phone - I have to wait for notification via snail mail. She said that would take 30-60 days for me to receive notification. Grrrrr.
Cheryl I hope you get good news!
Thank you ladies...... I applied in June, 2013 after spending a year trying to figure out on my own what was going on; thinking the pain in my legs and hips and the fatigue was dehydration, not enough exercise, too much exercise, growing old, etc, etc, etc. My primary physician (after telling her about my hips and legs and also the pain along the right side o my spine) sent me to a neurologist. I went through all of the testing possible to eliminate the possible diagnosis of MS. It was in October, 2012 that she diagnosed CIDP. I started IVIG infusions along with trying a multitude of medications for the neuropathy. This only effects my legs. The MRI did not confirm a diagnosis of MS based on leisions, however I have since learned that a false negative can hide MS as a correct diagnosis. From Last June until early this spring (2013), my other symptoms have progressed. I have "rubber" legs when I become fatigued, memory loss, "black holes" in my thought process, speaking ability and cannot follow through on more than 1 or 2 process directives. This is coming from a woman who raised active teenagers, ran a family business and volunteered at a nursing home. Both of my doctors recommended that I apply for disability which I did in June, 2013. I do have a final meeting with a SS doctor next Monday (9/30) and want to make sure that I am giving her as much information as I can to confirm a proper approval. Actually, I am really wondering if I have MS. I have all of the symptoms, although I do beleve that CIDP shoul be considered a chronic MS diagnosis. I am currently in PT trying to improve my core muscle due to my weakness and balance issues, however, when I overdue it I begin to have tremors that have, at times, gotten so bad that only compression, and ice packs on my entire body help. It makes PT a lost cause when so much time is spent calming my tremors down. I am taking with my letters from as many people I know that can support the decline in my physical ability, up to date notes from my PT and doctors. Being as prepared as possible will certainly be the key. Thanks for the info. Would love to continue to here any comments as I am sure this discussion will help others.
Hi, Heather.
I have also applied for Social Security. I visited their doctor for the exam. Waited the appropriate time, and I was approved on the first application. The Social Security Office fast tracks CIDP diagnosis.It is called Compassionate Allowance.
Heather R said:
I applied and got denied. In my experience you need a lawyer to win this one. Our disease is VERY rare & the government doesn't recognize it. If you can't prove permanent nerve damage then they will dick you around. I wish you the best of luck. Getting a lawyer will help big time with this.
Heather
Hi, Heather. Are you under 50 years old. My atty said it is easier to get disability if you are 50+.
Ivy
Heather R said:
I applied and got denied. In my experience you need a lawyer to win this one. Our disease is VERY rare & the government doesn't recognize it. If you can't prove permanent nerve damage then they will dick you around. I wish you the best of luck. Getting a lawyer will help big time with this.
Heather
I have CIDP along with foot drop , I fell 2 years ago and shattered my left ankle. Then the next year (last August) I fell again and broke my right ankle. 4 years ago I applied for SS and was denied b/c I was not 50 yrs old my lawyer told me. The government will not admit that it is easier if you are 50+ and disabled. I won my case after I turned 50 when I had my hearing finally. You will not automatically get SS, you probably will get food stamps and welfare first.
Feel free to contact me any time,
Pauline
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Hire an attorney - I went thorough the first phase and was denied - this was after 3 months in a skilled nursing fac and 3 weeks in a rehab unit. 9 months in a wheelchair etc.... Normally form what I have been told is that this first time around depending on factors the claims are denied. I am 48 and have been disabled for 2 yrs. I was denied in May 2013 ( I filed in Nov 2012) I appealed in Jun 2013 and hired an attorney in July 2013 still waiting for SSA to issue their answer to my appeal. This is my experience everyone is different but....... Also not sure what state you live in and if they have state disability program as CA does - any other questions please don't hesitate to send me a note..
Hire an attorney - I went thorough the first phase and was denied - this was after 3 months in a skilled nursing fac and 3 weeks in a rehab unit. 9 months in a wheelchair etc.... Normally form what I have been told is that this first time around depending on factors the claims are denied. I am 48 and have been disabled for 2 yrs. I was denied in May 2013 ( I filed in Nov 2012) I appealed in Jun 2013 and hired an attorney in July 2013 still waiting for SSA to issue their answer to my appeal. This is my experience everyone is different but....... Also not sure what state you live in and if they have state disability program as CA does - any other questions please don't hesitate to send me a note..
I applied for social security disability in August 2012 and received a denial letter in May 2013 stating yes I have discomfort but their evidence shows that I have use of my hands,& legs in a satisfactory manor. Their evidence shows that my condition did not result in paralysis (which is not true - I paralyzed for 9 months not only my legs & feet but my hands - I could not even feed myself. I filed my appeal in Jun 2013 they hired Binder & Binder in July 2013. i have helped them (Binder & Binder) secure necessary information, impairment questionnaires, lab reports, etc to help push the process. I am hoping that SSA approves my claim this time other wise it could take another 12 months. My advise hire an attorney now - through the appeal it is a flat fee if you are owed back benefits. I would at the very least talk to one of the firms that are out there - i.e. Binder & Binder and there are a couple others just do not remember the names. This is my advis
Sorry for the bad news
napper4 said:
Almost all SS disability applications are denied the first time, unless you have one of the Compassionate Allowance diseases. CIDP is not on the list. Deff hire a lawyer, expensive but worth it. I was approved last week. It took almost 2 years from first applying to getting approved.
One thing my lawyer said was that getting IVIG can get you approved, depending on the frequency and how it affects you. I get bi weekly infusions and feel like I have the flu 2-3 days afterword. Missing 6-8 days a month from any job is more than any business has to deal with.
Yes, CIDP IS allowed uder the compassionate clause of SS........
Absolutely......I agree 100%
LiveLaughLove said:
I have been sick since March of 2011 we didn't know what it was until here recently. I applied for disability in Feb. of this year and I just got my Approval yesterday. I didn't have to appeal or anything. The key is to make sure your initial application is filled out with as many details as you can give and let your neurologist know you are applying. In my case mine suggested I apply. He was crucial in my approval, he keeps detailed office visit notes & was detailed in his reports to them as to what I can and can't do. They do recognize this even though its rare, it's just a matter of how it's presented to them or how they want to see the painted picture.
I applied and used an attorney. But I also had a good neurologist that new what I needed and that was the results from my nerve conduction test (EMG). At that time I did not have CIDP. I had a surgery on my neck that to take out a herniated disc that left me with a myelpathy spinal cord injury. It also left me with permanent nerve damage. As soon as my neurologist got the result from my nerve conduction test he said to have my attorney contact him. I had applied and my attorney was working on it, but at the time I didn't even have a doctor. When a surgery goes bad it's extremely hard to find another doctor that will treat you. Or at least a specialist.
Now I don't know if it's just me or if you all will have the same problems that I have had, but disability is constantly on me sending out reviews every 2 years. And I was send a basic review in Feb of 2010 and in March of 2011 they decided to do a full medical review. So again i basically went through the whole process. My primary doctor, my neurologist and the doctor they send me to all said I had nothing to worry about. At the end of Aug 2011 I received a letter telling me they no longer considered me disabled so I went back to the same attorney. You can go down and apply to keep your benefits while going through any appeals process. Thats what I was doing was appealing their decision that they had determined that I was able to work again. So you are able to continue to receive you disability check, medicare, and medicaid if you have all those.
Social Security didn't put my paper work through to continue my benefits so I had to jump through hoops to make sure nothing got canceled and the only reason I found out the paper work wasn't put through was my medicare advantage insurance sent me a letter telling me they were canceling my insurance. So you really have to stay on top of things if you ever have this happen to you. The decision was again over turned at the end of Nov. 2011. I received a letter for a new review at the end of Oct this year so that wasn't even 2 full years in between reviews. I do not work, I have tried to have hobbies like gardening and a few things like that. I just didn't think it was good to sit around but I didn't ever lift anything heavy because my neurologist kept me on what I could and couldn't do. And if I did happen to lift anything heavy I'd really pay for it. Extreme pain. I always had pain and have been on hydrocodne since my operation. I also developed neuropathy, migraines and extreme trouble sleeping but my neurologist put me on the right medication so I finally started getting sleep at night. I also had restless leg syndrome .
I'm not sure exactly when the cidp symptoms started. The restless leg syndrome became a lot worse so that medication was raised and then pain started getting worse. Since I live 2 1/2 hours from my neurologist I never wanted to be put on anything higher then hydrocodone. I never wanted to feel high either.
In December of last year is when my pain with CIPD really started to get bad but because of my spinal cord injury it wasn't getting diagnosed until recently.
I wish I could find someone that was already on disability that like me also got CIDP. I'm curious of what expenses I will have and if I"ll lose my medicare advantage plan. I also wonder if I'll get to start at the 5 treatments like most people or if it will be cut back because I'm on disability to like I've seen others having to go every week instead of getting the initial 5 treatments and then seeing how often then you will have to go back for more.
I'm waiting for my spinal tap and then will begin treatment. Thats what my neurologist told me anyway. I should here this week on when I should be able to have the spinal tap and then I guess I"ll have to wait on the approval on the IVIG fusion treatments. My neurologist didn't like the steroid treatments at all and said I'd have to do the IVIG treatments.
So if anyone need any help on disability questions, I'd be glad to answer what I can. For me it was an attorney and having a neurologist familiar with disability.
And if there is anyone out there that is already on disability and then found out they had CIDP, how did that work out for them? I might just be rare in already having one problem and being on disability and getting the CIDP next. I can tell you it took several doctors and many tests to finally go back to the basics and get another nerve conduction test to get the diagnosis.
I got it on the first try,did it all on line by myself.Will start to collect in january.I was so surprised I got it.I think for me a lot had to do with my age.Being 60 really helped.
Hello All, napper4, I've been denied twice with appeal denied. I now have an attorney who has been working with me for a year now. Currently waiting on a judge to set a hearing date. So I guess I can still get denied. My finances are in a shamble. My health is too. I take prednisone, immuran, ivig, and other drugs. I take ivig 5 days straight every 8 weeks. But now I'm on hold because my blood clotting factor is running a muck and my neurologist does not want me to have treatments until the clotting is resolved. My last treatment was February. In the meantime, I'm suffering. CIDP smh!
So much pain!
I am going to share some great news. Approx 1.5 months ago I was diagnosed with CIDP as soon as I had the diagnosis I applied for SSDI without an attorney . Today I spoke to them. I have been approved. Tuesday they need some info and Wednesday they will make there first direct deposit into my account. Yay my state disability sent my last check yesterday. : )))