Hey Mark,

After over 3 years of fighting and going through the whole procedure twice, I was finally approved for SS disability early in '03.  At the time I was 54.  Medicare kicks in after 2 years of being disabled but, since I had started the process showing I was disabled in '01, Medicare started up as soon as I was approved for disability.

The first time through the process was a total nightmare where I had a lousy attorney and a psycho judge who felt I was faking everything.  When I reapplied to start the whole process again, I got a different attorney.  When I finally went before the judge after the first two denials, he had a doctor who reviewed my complete medical file and the doctor basically told the judge that I was not able to work and that I would not get better.  That statement pretty much sealed the deal for me and I received notice within a week that I had been approved for disability.

Good luck with your process.  As soon as you apply for disability and get your first denial, find a good attorney who specializes in SS disability and let them handle all the paperwork that follows.  Having just been diagnosed a month ago you might have a little problem with it all.  It depends on how unable to work you really are.  Just because it's difficult to work and you have been diagnosed with AS does not guarantee that you will be found too disabled to work yet.  Hopefully you have a good rheumatologist who will back you when you go to court and has properly documented the extent of your disability.  Also, NEVER say that you can get along with the proper pain medication.  ALWAYS complain about pain and how difficult it is to do anything.

Again, good luck.

Steve Anderson

PS.  If you happen to be in the Phoenix, AZ area, I can recommend a very good attorney.

I was successful in getting benefits ( disability) but am on my husbands health insurance so don't know about the Medicaid. I do know that you cannot be approved while working, you have to be unable to work, so I kept at it until I couldn't work anymore. I have private insurance but they required me to also apply for social security benefits. I had a bit of trouble since I am not HLA-B27 positive and the company viewed that as the "test" for AS. You need the support of your doctor (s) and medical information to back the diagnosis. AS is on the list of approved conditions for disability.

I was diagnosed with AS in 1997 and found out I tested positive for the HLA-B27 gene. I sent this information in when I filed for SS Disability and was accepted within the first 6 months. When the SS doctors see that you're positive for the gene, they pretty much know what's to come for that individual. I never even considered hiring a Lawyer as they get 30% of the backpay you will receive. That's a big chunk of money when it's all said and done. Backpay from SS will be from the very first time you filed till the time you're approved plus interest. I wish everyone luck that has filed or is thinking about filing for SSD. Yes....you are considered disabled if you have AS. Good luck!! :)

I filed for the first time in Feb. And have been denied. I hired a disability advocate instead of an attorney after being turned down the first time. They have done ALL the paperwork and footwork for me. And they treat me with respect. I wish I had contacted them before I filed, and not had to go through so much with SSA

Still waiting on a answer for the first time I applied. Feb 2010 I have been to two of there Dr's and for 1 set of x'rays. I had a truck load of X'rays and paper work for them when I applied. I hope that I get some kind of answer before the end of the month. I do not have a lawer as of right now. If the refuse the first time I will get a lawer.

In the UK it is impossible.  I rececently was given a medical and found 100% fit by a bunch called ATOS, who I believe are an american company.  I have complete fusion,uc, and less than 2cm chest expansion. And constant uveitis.  They found I had 70% spinal function etc. Now all I have to do is convince my body that what they say is true, because my specialist measures it at about 10%.  I simply cannot bend at all and walking is getting harder and I am going bankrupt.  I hope its easier in the US and please take ATOS back.

My mom is applying for LTD through her school. I will let you know how it goes.

It's sad that we have such a hard time getting disability. I know I will be going this route in the next few years, and I'm not looking forward to it. I'm getting slower and slower, and movement is getting harder each year.

For those of you who have filed, did you do so on line or in person? I took myself out of my Rhumy's care over a decade ago and have simply relied on annual physicals with my GP.  I had intended to do periodics and never thought about one day needing SS DIS. Unfortunately the first couple times I intended to go back he wasn't on my plan and the out of pocket costs were going to be huge so I interviewed a couple docs on my plan but I was unimpressed with their knowledge of the disease or their demeanor.

The majority of the online questionnaire  prep material is asking for records I really don't have much if any of.  I expect to be denied initially any way but am collecting info and wondering about others' specific experiences and results.

I recently applied for disability because I have run out of work that I can do where I live that I can do full time with my condition. They said that as long as I wasn't make more than $1000.00 per month then I could apply. Any more than that is meaningful income according to their standards. Do what you gotta do and whatever you do don't give up.

When I called about disablity, they told me I had to go to part time and that I was aloud to make so much money. I think now its 1000.00 and that I would recieve about 1000.00..I recieved a letter the other day saying that my file has been annotated "critical" and I would go before the judge very soon..Hope this helps

I retired early on health grounds due to AS, however whole system different in UK.

I am eligible for Medicare & am turning 45 soon. The problem I ran into is the supplemental insurance if you are under 65 costs around $1000 a month.  I didn't even check on the cost for the drug supplemental.  What's the point?  But be  careful once you are eligible for Medicare, Every year you choose not to have it the price goes up 10%.  So if I continue to refuse it until I'm 65 it will go up 200%.  It's insane!  Ugh!

I'm only 21 and my regular doctor, the one who found the AS then sent me to my rheummy, DID find me disabled. I have already been denied once, I got a good lawyer so hopefully I won't keep being denied...it's horrible because I don't have ANY insurance, I'm paying for all of my medicine out of pocket, the pain pills, sleeping pills, depression pills. The only thing I'm not paying for (THANK GOD!!) is my Humira. I take a shot every other week. The Humia drug company is giving it to me for free, because I don't have insurance and my family couldn't afford to pay for it...it cost around 1,500 a month...just for the 2 shots...I'm hopefully going to be getting some kind of medical health care when my application is approved..good luck!