Social Security Disability with mds

[gbrilla]

Has anyone applied for Social Security Disability having MDS. If so, has anyone been approved? I'll be 61 this month and wondering if it is worth going through all the paperwork and hassle for disability or just wait and collect regular Social Security one year from now. Thanks.

[Ruth Cuadra]

Hi, George.

From what I understand, you're right that the process of applying for SSD can be quite a hassle, but if you are able to follow it through and then appeal (as will likely be necessary), then the benefits would be available to you sooner. There are people with MDS or aplastic anemia who have been approved for SSD. If any of them are reading this thread, I hope they will post here.

Also, you indicate in your signature that you are retired Air Force, so you should contact your VA office to inquire if you are eligible for any programs based on your service record.

Hope this helps.

Regards,
Ruth Cuadra

[Ruth Cuadra]

George and all,

There was a presentation on insurance and disability issues at the 2006 AA&MDSIF Patient Conference given by Kevin Lucia from Georgetown University Health Policy Institute. Although they are primarily a research organization, they may be able to provide some guidance and referrals about the process of applying for SSDI. There is contact information at their website.

Also, Leigh Clark of the AA&MDSIF tells me that several MDS patients who believe their disease is service-related have fought the VA and are now receiving benefits. Some of these patients participate in the Foundation's Global Support Network. If you are interested in talking to any of them individually, call Leigh at (800) 747-2820 and she will get you connected.

Regards,
Ruth

[Missyblue]

I applied for SSDI as required by my LDT (long term disability) insurance at work. Being as I was severly immune suppressed at the time I was able to do it by computer then phone interview. You need to keep on your doctors to send in the paper work but it went really well. I am still on the LTD but if it ends then Medicaid would kick in. I plan on being well by then. Also you need to apply for SSI at the same time but plan on being denied, it is just part of the SOP's. Good Luck!!

[mscrzy1]

I was on Soc. Security and SSI benefits when I was battling AA. I was lucky enough to have my application go through the first time with no appeal process. After I put in all my paperwork, they called for a phone interview. The man who gave me the phone interview was actually incredibly helpful and told me that he needs the worst case scenario with everything. He said that if I gave him the worst case scenario, then I would have a better chance of getting approved. He was right. :-) I was on Soc. Security and SSI benefits until my counts were at a level that was stable, and I was able to go back to work full time. Then, I cancelled the Soc. Sec. and SSI.

Hope that helps!

[renobabe]

Hi I Have Alot about 5 medical problems and now this MDS well I Have a laywer this time.I have been denied becuse of my age 52 and Not worked enought. and hubby Makes to much Money Ha Ha . We will see.any feed back will help . Reno

[Lori Patrick]

I was officially diagnosed with MDS last October. Prior being correctly diagnosed, I was hospitalized for 2 weeks in May of last year. When I spoke with the Social Security guy he said my case should be an open and close case and that the effective date would be back in May. I got my first check in December. I completed my portion online and my Dr. submitted the records required. I was afraid I would be denied since you hear of people being denied a lot, although, that was not the case for me. They approved me for 2 years. Hope this helps. Lori

[renobabe]

Val, ;diagnosed MDS Aug 2010;currently getting Aranesp shots and blood test every two weeks.And Have R.A
Thanks Lori for your info Do you have hubby just asking we have no ins and he has not worked since aug 2010 and he is the only one working.

[Lori Patrick]

Yes I do have a hubby - we were married right before I got sick. He has insurance that covers me, thankfully. Others may be abe to offer advice on what to do if you have no insurance. Good Luck. Lori

[renobabe]

Hi thanks again i hope someone reads this im in a big pickle lol we dont have the funds to keep up with all of this Can I put This On Hold !!!!!
Today I have to go see doc and get blood draw now every week No Way !!!

Reno

[Andrya D]

Follow this link from SS to see if you can find MDS.

http://www.ssa.gov/disability/profes...ltListings.htm

[Bob Macfarlane]

I applied and was granted SSDI because of MDS. The fatigue brough on by MDS kept me from continuing in the job for which I trained. They really did not give me any trouble with it at all.

Getting SSDI at 61 I receive it as if I had waited until 66 to apply for SS.

You did not happen to have served in the 'Nam?

[felursus]

It's always worth applying if you can't perform the job for which you were trained/have worked because of the symptoms of your disease or because of the side-effects of your treatment. The form is very intimidating, and you need to be able to write good "essays" (although the space allowed isn't really sufficient). If you have any issues with writing those, get someone who is good at writing help you. You need to be able to demonstrate that you are unable to work at your normal occupation by virtue of disability. They ask about all your meds, and you have to give the name(s) of MDs who have rescribed them. This includes all meds not related to the blood disease.

Some of the questions can be hard to answer, since they ask things like the percentage of time you spend seated, standing, kneeling, crawling, etc.

I think a lot of people get denied because they don't fill in the form correctly and/or don't write complete and informative essays or their MDs' office(s) don't complete their part accurately and fully.

Of course it's easier for people with "obvious" problems performing former jobs - like a lumberjack or ballet dancer who has an amputation - but good and thorough documentation should enable most people with a marrow issue to get SSDI if they are unable to work.

I'm a PT, and I've completed an SSDI application for someone with spine problems.

[Susan]

I was approved after only 2 mos but for PNH/AA. I made sure my doctors knew of my increasing fatigue, weakness and shortness of breath, documented it in file well before applying. Gave my hem a list of all symptoms, what can't do that could do before.

For me, asthma and another lung condition make my symtoms worse. Added my osteoporosis from long term Prednisone for good measure plus osteoarthritis, anything that slows me down. Included Depression, feeling overwhelmed, and was seen few times pre-app, and since. Explained not enough energy to clean house, etc and husband cooks. Last PNH consult letter mentioned forgetfulness, "flight of thought." All hospital addmissions in last 2 yrs impt to add.

I did use a lawyer definitely speeded up the process. Hospital scoial worker said not nessecary. Surpirsed, SSD approved back to a yr and a half prior.