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Posted 1/6/2009 2:33 PM (GMT 0)
Has anyone tried to file for disability benefits from Social Security with a diagnosis of Mixed Connective Tissue Disease? After begging several physicians to tell me why I was so sore and tired all the time, I finally got one to do an ANA and a couple of other antibody tests that were positive. I ws relieved to know that the pain and fatigue were not due to depression or menopause. But the struggle I have is with being so unreliable. I cant seem to pick out a pattern or triggers that warn me previous to an episode of extreme fatigue or annoying muscle/joint pain. I have good days and bad days and with the progression of this disease I'm having less good days now. Social Security initially turned me down (as they do everyone I'm told) due to "my job experience". Funny, I thought they were evaluating my symptoms, not my experience. And if they did consider the symptoms, they would understand that I cant be depended upon to show up to work on a weekly basis anymore. So I appealed their initial decision and now we're playing the waiting game again. I just wondered if anyone had ever been successful in being granted benefits before the age of 67 with this diagnosis and what you had to do to get them...
Posted 1/6/2009 2:48 PM (GMT 0)

Morning Katie, and welcome to the group. That is not my diagnosis but yes there many people here that are on disability with MCTD. My lungs are shot and I was fortunate to not have any problems with getting on Disability I have always heard if you get turned down the first time to get a lawyer. Like I said I was never turned down but it I would not miss around Since they don't get paid if you don't and it can take forever to get approved. I sympathize with you about never knowing. I have o2 all the time but sometimes i feel I can at least work at a desk. Other times I wake up in the morning and can't get out of bed. So it's true ya just never know with this stuff. I could just see me tell a possible employer I'm a good worker but you can't count on me. LOL. Sad but true. Oh I'm 51 years old. I'm sure others will be here to help answer your question and I hope you choose to stick around and be part of the family.

hugs

carol

Posted 1/6/2009 4:08 PM (GMT 0)
Thanks Carol - My husband Kenny is also a stage 4 COPD patient so I'm familiar with what you're going through. He's on O2 24 hours a day and has just gotten used to the CPAP machine for the apnea he had at night while trying to sleep. Are you using one too? He says it's kinda hard to get used to but he does get a better nights sleep (no snoring!!) and it seems to have increased his lung capacity somewhat. He wasnt denied disability either. He's 56 and fortunately had his 30 years in with the county govt so he was eligible for retirement when we got married 3 years ago. We are "friends of God" as well and ya know, sometimes ya just gotta read the signs He gives us daily as answers to our questions. I called a lawyers office - twice - she never called me back. I'm taking that as a sign that I dont need one or that the one I called was not going to help me with my case. I'm willing to wait and see what SS says after reviewing my appeal. But I did get another hopeful message that something good was on the horizon for me. Patience was never one of my virtues but I'm learning...
Posted 1/6/2009 5:45 PM (GMT 0)
Katie,

I have mctd and have been on SS disability for 3 years.  It took 3 applications and a lawyer to finally get it approved.  The standard is that you are completely disabled and expect to be for a year or more.  My case was extreme and life threatening: I was a quadriplegic and could not swallow when I first applied and got turned down with the comments that I would be OK.  The second application was not much different and they decided I could do something I never did to earn a living....strange.  I think they hire Moe, Larry and Curly as doctors to review cases.

Hired an excellent attorney the third time and had approval within 3 weeks and did not have to appear before the administrative law judge.  He just looked at my case and said you qualify.

The whole process is one of denial not approval and if you fill out the forms incorrectly or your doctor's letter is not worded just right you will be turned down.  That is where an experienced disability attorney can help so that you don't shoot yourself in the foot. 

If you are capable of some work you probably won't get approval.  After 55 the standards are lower but it is still difficult and some states have backlogs of several years to appear before an ALJ.  Totally unfair.

Good luck but don't try to do it yourself.  Attornies take the cases on contingency and the initial interview will be a good indication whether you really qualify or not.  Attornies will not take cases they think are not winnable.

Bill

Posted 1/6/2009 8:31 PM (GMT 0)
I am 31 and you can see my dx list below. It took me several years and a lawyer but I am on disability now. I am actually up for review I dunno why since I only started getting disability a year and a half ago- I actually get SSI cause I was short on the points for SSDI. I wish I could get SSDI on my hubby's account cause my check would be bigger and stable but they say I can't unless he dies and I prefer having him around to losing him and having a stable check. Besides we haven't been married 10 years yet which is the minimum to get benifits if he died. Lovely system they have isn't it? Well, I hope someone with MCTD comes along who can offer advice my only advice is make sure your doctors are on your side, get RFC forms from them, get a lawyer, and hang in there cause it is a long process.
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