Guest guest Posted December 15, 2006 Report Share Posted December 15, 2006 I don't know if you guys read my e-mail also. I got denied for the 2nd time on Nov. 29th and now met with a lawyer and wish I would have done this the first time. Sounds the same, my primary doctor doesn't know about CMT and thinks I can be on a regular work clock, which I can't. Then again, last year I asked her for a note saying I could go to college for 6 hrs a day (not including the 2 hr drive there) and things have changed dramatically since. My neurologist knows how it is, but I don't have the insurance to see her at $150.00 a visit, but if my primary O.K.'s it, then it's alright. I'm telling you, just going through the system is taking the biggest toll on me. Talk about stress! That's what I tried to impress into the attorneys' way of thinking. I started to cry explaining what's been going on and how many hours it took me just to get up to her office on time. I had to wake up 4 hrs in advance to get ready. I told her it hurt to take a shower because of the water hitting my legs. She actually got tears in her eyes. We'll see what happens and Gretchen was right, it will probably take 2 years. They just got done doing cases from 3 years ago because I live in the Keys and they don't come down here very often. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2006 Report Share Posted December 16, 2006 , Have you considered going to a MDA clinic? The neurologist visit would be covered by your insurance or free if you have no insurance. Anyway, my advice (from my experience with SSDI) is to get a good supportive doctor who will be willing to help you and to write a letter to the Administrative Law Judge explaining your symptoms & why CMT. prevents you from substantial gainful employment. It's bad enough that most Drs. only know very little about CMT and that we have to educate them. Just having a CMT diagnosis is not enough, you have the burden of proving that you are unable to work anymore because of the symptoms you have. Thankfully, I was approved a couple of weeks ago after 16 mths. from the denial letter. You need a good lawyer also. I think that what really helped my case was the form my Dr. completed explaining my symptoms & why I couldn't work anymore and he also wrote a narrative explaining CMt and how it affected me. Also, I wrote a letter to the judge explaining CMT and how I was affected. I believe that this along with my medical records is what helped the judge to decide to approve my SSDI. If you would like more info. on the form I used, just let me know. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2006 Report Share Posted December 16, 2006 I am trying to get my disability also. I was denied on September 2005. But all the attorneys tell me that they will not take my case until, I am denied by a judge. I really don't understand why that is. It is so frustrating. I have had my disability since 1978 when I was 12 years old. My situation is so hard to understand but I will try and explain it here. See my husband makes too much for us to go on his income so they say they need to go on my income. But see I have not worked enough in the past 10 years to receive SSI. But I applied back in 1997 and I have enough work history from 1987 to 1997 so they are going to use that. But they need proof showing that I had the disability before 1982. I found it but am waiting for my hearing before the judge. Plus I have two children that were born before 1997 that they said I could get back pay for. However it's just so frustrating to play the waiting game. I would like to know some of your opinions about what I should do?? Thanks Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2006 Report Share Posted December 16, 2006 Holly, Thanks so much for the information. Yeah, this time I'm going to make sure I've got all my ducks in a row. My daughter had to remind me when I lost total feeling in my right hand 4 years ago and that lasted for almost 6 months and that's also when I learned " ON PAPER " I had CMT. Too much in such a short amount of time and I think I blacked alot out purposely so I could get by. I didn't realize the MDA clinic takes care of CMT patients. I'm on Medicaid now. My printer is broke right now, but I would like to have a copy of your form. I'll let you know when it's fixed. Thanks so much, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2006 Report Share Posted December 17, 2006 Sue, I am confused. Are you applying for SSDI, SSI or both? They are 2 different programs, with different requirements. I would suggest looking for another attorney who will take your case. You do not want to attend a Hearing without an attorney who can represent you, in any case. If one attorney says he won't take your case, move on to another. Was your first attorney a member of Nosscr.org? If not, I'd suggest first thing Monday morning, you call (800) 431-2804 (toll free Nosscr phone) and ask for practicing member attorneys in good standing in your area, then find one and go for a consultation and take copies of all your files. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2006 Report Share Posted December 17, 2006 , If you haven't already, you need to check out the Social Security website. http://www.ssa.gov/ You mentioned that you are on Medicaid. You might qualify for SSI, which is a total different program then SSDI. The website below is a benefit screening tool to help you see which you qualify for. There seems to be a lot of confusion on here about SSDI and SSI https://s044a90.ssa.gov/apps12/best/benefits/ Just let me know when you get your printer fixed and want the form my attorney used. Hopefully you have a good attorney. I know how you feel. It is a long and frustrating process appealing a denial. I wish you well. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2006 Report Share Posted December 17, 2006 Sue, Even when we were seperated, we still kept the same bank account because we had enough trust in each other and it wasn't a big deal (we also didn't have any money per say to worry about in it). The first thing I was told was to drop the account. The least you have the better off you are in a way. I'm not saying to lie, I didn't, but it seems you get more help if it's not on paper. Like I said, I in no way lied, but it was stupid little things that prevented me and still do from getting help. The first time, since I was working on tips, I was literally making $200.00 per year to get any help. There is a fine line. Quote Link to comment Share on other sites More sharing options...
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