Filing for disability due to AS

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Hi all,

?   I have not worked since taking an early retirement from work in March 2015 because of the AS and other things.  I had a personal bias against filing for disabilty and had some income from a pension, IRA and annuity that I was drawing from.  In late 2016 it became obvious that that approach wasnt working so I gathered my medical records together and filed here in Texas.  I was cocky since my problems included two of the conditions that social security specifically lists as permanently disabling - AS and severe degenerative disc disease.  To make a long story short they took over four months to process my claim and came back with a denial.  They told me that my condition was "well managed" and there was no reason I couldnt go back to my old job which included consuting and travelling.  I am no longer so cocky and I have engaged an attorney to fight that decision.  We are pretty sure that we will eventually win this but I was told that it could take up to year more to process.

?  I guess I'd like to hear any other experiences with people who were filing for disability with AS.  I was told that because pain is so subjective it is the easiest thing to "fake" and consequently the easiest thing for social security to deny.  But to me the frustrating thing is that there is so much more to this disease than just pain and stiffness.  This disease is such an insidious monster that effects your body in ways that are sometimes hard to describe to someone who is not famliar with it.  I personally see five different specialists in addition to a primary care doctor.  I see a rheumatologist, gastroenterologist, hematologist, cardiologist and a pain management doctor.  And since I have had three spinal surgeries and am looking at a fourth you can add a sixth one - a neurosurgeon.    I recently joked with someone that I spend so much time in doctor's offices that fact alone would make it hard to hold a job.  Add to that the constant pain, stiffness, nausea, lack of sleep, constant fog of living on narcotic pain pills and all the other joys of AS, I couldn't imagine being able to hold any full time work.

?  Anyway, enough of that.  I'd like to hear about your experiences with applying for disability in the U.S.A.  Did you have better success than I have so far or did it go better for you?

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  • Posted

    I haven't filed for disability yet.  I'm going to try to keep on working until I can't anymore.  I often wonder how hard it would be to get.  I see lawyers ads all the time on TV wanting to help in filing for it.  I'm thinking when I'm ready I'm just going to hire an attorney from the start.  I also have other autoimmune diseases, one of them being PBC which in time may be what does me in.  I also have autoimmune diabetes and thyroid.  I will follow you to see how you make out.  Good I hope.  

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  • Posted

    Hi Peter, wow, in my mind you should be awarded disability status...but the powers that control us are not, as you say, experienced in the field of AS and associated illness. Suggest you gather up some useful stuff for your lawyer....e.g. MRI evidence, letters of recommendation from specialists...X Rays, and letters from everyone you know who can help your case....Good Luck..G
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  • Posted

    Hi Peter,

    I filed and eventually received approval for SSDI some time ago. Getting a lawyer is the best decision. They are only paid if you are awarded, and then their pay is restricted by law. I don't believe a competent attorney will take a person without solid evidence they will be approved.

    Unfortunately, it can take a while. At least 90% of first time applications are denied. The length of time it takes to reach approval status varies. In my case, it required a considerable effort to obtain medical evidence, then waiting for arbitration. It was 2 1/2 years for me.

    They consider many factors when determining disability. One hurdle is ability to work. It was obvious I couldn't perform in my position at the time. I had to prove I couldn't work at any job which would provide a very minimal level of income. (I'm not sure of the figure, but it's very low-@$1000/mo)

    I hope this is helpful. Hang in there. I believe Social Security denies many people hoping the applicant will give up because of the hassle.

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  • Posted

    Thanks all for getting back to me.  As I said earlier, the strangest thing to me is that their website specifically lists AS as one of numerous permanently  disabling conditions as well as the degenerative disc disease. I really thought having a diagnosis on paper would have made this easy.  Guess I learned differenty.  I also intended to work until I couldn't.  My intention when I took early retirement in March 2015 was to continue my consulting career as an independent consultant in my field or to get work with a local company where the travel was not required.  Strangely though, my condition did not get better when I got off the road.  It has distinctly spiraled downward since that time.  Not sure why but it is undeniable.  Gloria, to address your point about gathering up the supporting information, I actually spent a good deal of time working with previous medical professionals to get my records.  However, social security administration told me dont worry, we'll get those records.  It was a lot of wasted effort on my part.  I certainly hope that it doesnt take 2.5 years to process.  My attorney says my area is one of the faster areas in processing these appeals but he still says be prepared for a wait of up to a year.  His fee is set at 25% of what I may get as "back pay".  They will make a determination of when the disability actually started (provided they finally approve it) and he will get 25% of that retroactive part.   So.... we wait.  We'll see where it goes.  Thanks again, guys.

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    • Posted

      Hmm...so, getting an atorney from the start may not necessarily help speed up the process if he/she makes more money if it is dragged out.  I'm leary of attorneys since I was ripped off by a greedy one.  I had a case where I lost my job because I went back to work (at a hospital that has since closed down) after foot surgery and needed a cane for assistance.  I sued them for violating the American Disability Act and won.  Not only did the attorney take 25% but seemed to have double dipped and charged me for every little thing like phone calls, letters, travel time, expensive hotels, dinner at the Olive Garden, etc.  She got more than I did.  I thought it was one way or the other, not both.  The only attorney I ever trusted, a deacon to my church, died.   Going to be hard to find another like him.  It's terrible that you have to fight by hiring an attorney.  You are the needy one and attorneys are like vultures feeding off of you.  I hope it doesn't take much longer for you.  I'm screwed when it is my turn because I don't have money put aside since I live pay check to paycheck. I recently got a market value adjustment and will be getting $5.22 more an hour.  I'm going to start trying to stash money aside. 

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  • Posted

    Hi,

    When I went through the process it seemed like SSA treated people like they were trying to avoid having to work for a living.... Although they may experience many people applying for that reason.

    In my case, they needed more than the AS diagnosis. They recognize that many individuals with AS can manage symptoms and work a lifetime. It was the 2nd round where they received more in-depth medical documentation. I don't know if I could have managed that on my own.

    I understand hesitation in hiring a lawyer. In my case, it was a blessing. I could not have managed it on my own in my condition. It also would have taken much longer to get approved. Most importantly, with SSDI/SSI cases, the lawyer has strict rules regarding payments. I don't remember the amount, but it's under $5000, and much less if the back pay isn't substantial.

    Finally, I'd like to say the 2 1/2 years for me was from the time I received the application until the checks arrived. After I hired the attorney, we gathered evidence, then waited for the first available arbitration date. They were pretty backed up at the time. The experienced attorney usually has the best information as far as wait times in your area.

    Hang in there!

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  • Posted

    Hi everyone! I'm so sorry to hear everybody's horrifying disability stories! I will tell you that a lot has to do with what your rheumatologist is putting in your records. My dr. Had suggested that I go on disability about two years before I actually filed. She told me she was going to be very detailed in her documentation so that when I did file, they would have all of the necessary info. She also said that unfortunately, because of my age, I'm 39, that a lot of times they just deny it right away! I do not suggest getting an attorney right off the bat!! You will still have to do all the paperwork and legwork, and they will get that 25% for basically filing under their name instead of yours! This does not increase your chance and it would be a real shame if you get approved right away. I was very lucky and got approved the first time I filed. I filed mid July and got my backpack check in the mail the day after Labor Day without even knowing I was approved! You could imagine the surprise! So just keep your head high, miracles can happen!

    Good luck to all

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  • Posted

    Hi Miche,

    ?   You make a good point about the evidence given by the rheumatologist.  In my case, that was something that I was very concerned with.  We just moved to this area about a year ago.  Of course I had to get a whole new set of specialists to match the ones that I had been seeing.  That included a new rheumy; a new pain management doctor and a new cardiologist.  I listed names of all the doctors that I ad seen; both the new ones and the old ones.  Unfortunately the SSA people specifically said that they were only interested in the latest doctors in each case.  In the case of the rheumatologist they ignored the doctor that did the diagnostics, made the diagnosis and tried numerous treatment options.   The new rheumy just basicallyused the old diagnosis and threw a few drugs at me.    By far, the most convincing evidence would have come from the first rheumatologist.  As a matter of fact, the new rheumy was even a little skeptical about a diagnosis of axial spondyloarthritis.  She said on a couple of occasions that I have so much physical degeneration in the spine that she wasnt convinced that my pain wasnt just coming from that as opposed to inflammatory pain from an AS related ailment.  So she was not my best witness if I'm trying to make the case for AS.  You could probably make the case that pain is pain regardless of it's cause but I believe that you weaken the whole case if you debunk the claim of AS.  They did th same with my pain management people.  I had seen a doctor for three years previously but they used the one that I had only been seeing for about 8 months.

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    • Posted

      Hi everyone...I hope you don't mind me making a comment.....it seems so difficult for claiming disability pensions.....however, in my case...there are none to claim for. I live in Indonesia where there is no help from the Government of any kind. No pensions for anything unless you work for the Government. I can't even afford specialist treatment and now have to sell my property for medical expenses.

      We don't even have a rheumatologist within a four hour mountain drive...just a neurologist who tries the best she can to help me. I have to struggle on regardless...making my life very difficult. I did go to Thailand and was diagnosed there....and then later at an International Hospital here...very expensive. I do hope you all have some success with claiming disability pensions...but spare a thought for those of us who can never do that...Good luck..G

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  • Posted

    Gloria,

    ?   Youre correct to point out that this benefit is not universal.  You could also add that good medical care in general is not universal, so the quality of care is better in some places than it is in others.  Certainly not everything is equitable.  I would have to add though, that I did spend over 35 years paying into our system from my paychecks in order to have this benefit.  That is why it irks me a bit when they fight me so adamantly when I need to take some of that back.  I am actually someone who is very bothered by so many people expecting the government to support them.  However, I dont consider a system where you pay up front and collect later to be an entitlement.   Sorry.  I'll climb off my soapbox now. 

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    • Posted

      No Peter stay on your soap box....I agree that when you have paid so much for so long you are entitled to get what you paid for...disability pension/benefits. I really believe you should feel entitled...but I get what you are saying...Before coming to Indonesia..I lived in a developed "western" country...where every man and his dog are on benefits of some kind. They've never paid tax ( or even had a job ) but they expect to get hundreds if not thousands of dollars for not working...or claiming to be sick. That's what makes it so hard for others who are in genuine need. Maybe we can share that soap box you have....it's needed.

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  • Posted

    Hey everyone!

    I get where you all are coming from...I have worked since I was 16...although I have gotten disability benefits, between my insurance and copays and all of those expensive meds that we all have to pay.....nothing really helps...by the time we meet our deductible and out of pocket...if I didn't have my husband who can work...I would be screwed...living in the us does not help matters at all!! The fact is..if you are sick..or anyone in your immediate family it changes your life...and if you haven't been through it you will never understand!

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    • Posted

      Well said Miche...I guess it makes no difference where you live...the pain is intolerable for all of us. My Neurologist has just put me on Morphine....it was a shock. It seems to indicate the beginning of the end for me. What else can I do if all else fails...succumb to the most powerful drug available. But I don't want this...The Tramadol isn't enough any more and nothing else is available here. I read of all sorts of meds available in the "West" but here they are not. What can I do....G

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    • Posted

      Is there any way to receive meds through the mail?  Maybe your neurologist can receive medications at her office?  During US prohibition, physicians had unlimited access tio alcohol!  

      I can imagine how much suffering it is to go through flares with only Tramadol available.... I wish I had a solution for you.

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    • Posted

      Hiya..Neurologist has now put me on Morphine Slow release tablets...one a day when needed. Thank the Gods for that the day before yesterday when the pain was so bad. But I don't want to take them all the time only when a flare up happens and I can't tolerate the pain. Very expensive here...200,000rp for ten...equivalent $20...and will only last maybe two weeks if I am strong and ignore the pain. To most people this seems cheap but here that's expensive. I dont have an income nor a pension of any kind..making it difficult to make ends meet.

      But I will try to cope..and hope that the flare ups only last a few days.

      Will rest as much as I can with a teenager still at home ( still at school )....alone most of the time...struggling on.  Thank you for your kind thoughts..G

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    • Posted

      Has your doctor discussed trying biologics?  Enbrel is for treating AS.  I had my 1st shot at the doctors office in Dec and I started getting relief just after 4 weekly doses.  My swollen hand of 2 months went down along with decreasing pain in my hand and tailbone which were flaring up at the time.  I was having problems with itchy rashes at the injection site because the autoinjector has a latex covering over the needle.  I had to switch to using single dose vials that you have to add saline to the freeze dried vial and then draw up in the syringe and self inject twice a week.  The auto injector solution stings probably due to added preservative but the solution of mixing the vials does not.  I had to temporarily stop using Enbrel because of having a knee replacement.  I should be able to resume in another week and I can't wait since I am starting to flare up again in knees, hips and feet this time.  I do not show inflamed SI joints on xray and I am not HlAB27 positve and sedrates don't work on me because I have abnormal RBC morphology.  I do have a very high CRP, enthesitis and every joint I have has been inflamed at one time or another along with every single flat bone I have including my tailbone.  My entire pelvis, spine and ribs hurt to touch.  In August I had costochondritis which is another symptom of AS.  I had started with symptoms since I was 21.5 years old and since I have gone through menopause, I have gotten so much worse.  You should talk to your doctor about trying Enbrel.  It is quite expensive but the drug company does offer assistance for patients in need.  It will help you from getting any worse.  Have you tried dexamethasone which is a steroid?  It gives me great relief in both pain and stiffness and isn't too exspensive.   Wish you the best.

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    • Posted

      Hiya and thank you for your info...but here where I live I doubt that the doctors have ever heard of what you are talking about. I live in a remote area of Bali...where we have to find our own way without much help from the medical profession. I will just have to muddle through this on my own....with the help of wonderful people on this site...such as yourself.

      I have been very sick for a week now...and with problems in the bowels also severe pain in so many different areas of my body. Shoulders, rib cage, legs, hips and even my feet and hands. The morphine has helped so much...but I wish it would all stop as I need my life back, such as it was....phew.

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    • Posted

      Hi Gloria,

      I'm sorry to hear that you're having such a tough time with pain. I am happy to know the morphine is helpful. I completely understand your situation. For the past 2 years my pain (and suffering) has consistently been rising. Although the last 3 days I've had a little relief.

      I don't know what it's like to live in Bali, although I imagine you are in a beautiful area. I'm in the US near top medical care, but it hasn't helped. I haven't had a competent Rheumy for AS for 20 years. Also, the new meds are useless for me, because I can't take them. And I'm allergic to most old meds. I'm not alone on an island, but it can really feel that way.

      Especially when I speak with so-called top physicians... they don't know about AS and treat me like I'm crazy, a drug addict, exaggerating and lazy. "Top medical care" is useless if they don't or won't help.

      My fear now isn't the pain increasing, I know it will go up, then down. There's a huge heroin epidemic in this area. Those in power have decided it's caused by individuals with opiate prescriptions. Laws are quickly passing forcing chronic pain patients to use "natural" pain techniques. I've tried everything. All I want is a couple hours reprieve from pain so I can accomplish small tasks when my illness flares. I've tried so many things. The opiates give me a short break. A heating pad doesn't.

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    • Posted

      Hi Kathleen...thank you so much for your post..I'm sorry you don't have enough care where you are..I thought the USA led the world on AS...gosh I was wrong. I have a heat pack which goes in the microwave..but guess what, the microwave broke and nobody here knows how to fix it. The heat packs did help before....maybe I should try hot towels. The morphine is good but I can't rely on that all the time. I now have to sleep with a rolled up towel under my head as pillows are making things worse....it seems to help. How wrong the doctors are...I wish some of them would understand but they cannot unless they have it too....but I wouldn't wish this on my worst enemy. How can this disease go un noticed by the medical profession..when so much is being done in other fields...How can we get noticed I ask myself. Big hugs to you for your help and understanding...G

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    • Posted

      Kathleen,

      ?  I nearly laughed when I read your comments about doctors here in the states. We've talked many times on this forum about finding a good rheumy as opposed to just finding a rheumy.  Big difference.  But the problem goes wider than just rheumys.  I see a boat load of specialists for various issues.  I see a cardiologist for an enlarged aortic root and subsequent valve problems.  I see a gastroenterologist for various digestive related issues.  I see a hematologist because my iron levels will not stay at a good level.  Of course I see a pain management doctor for the obvious reasons.  And finally there is the rheumatologist.  All wornderful doctors.  In each and every case, I make it clear that I am dealing with an autoimmune disease.  To a person they each nod and blink their eyes as if to say "so, why are you telling me this?".  Now there is evidence for a connection to AS for each symptom I've listed.  AS can cause gastrointestingal issues.  It can effect connective tissue in the tissue of the aorta.  It can impact the absorption of iron and other nutrients.  And obviously it causes pain.  None of these excellent doctors address the issues as part of a bigger picture.  They dont see the connection.  They dont get it.  My pain managment doctor kills the nerves in the facet joints of my lumbar spine.  Then she cant understand how and why I could still hurt.  She doesn't understand that AS pain is very diffuse and not tied to just specific areas in the spine.  None of the other doctors even ask the question about how the spondyloarthropathy is doing because they treat each issue as a standalone issue with no connection to the whole.  So we really have a problem in that many many doctors simply don't get it.  My wife has rheumatoid arthritis and she doesn't have the same issue.  All of her doctors understand that her primary problem in life is the RA and it effects all areas of her health.  Both when they are making a diagnosis and when they are determining treatment, her RA is front and center in importance.  Maybe we'll get there some day too.

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