Re: help social security disability
Hi Richard, I'm sorry you have been diagnosed with this disease, but welcome to this bulletin board of very caring people.I wonder how come your medical records only documented meige syndrome when you have other forms of dystonia? You should check out the bebrf's main page (link attached) for their address where you can get help, and also go to the meige syndrome write up there for possible information. I'm sure others will answer your post. Good luck and keep in touch. June in Toronto, who's not sure how the USA disability works, but knows that you need a good doctor to document all the limitations of this disease.
Related link: http://www.blepharospasm.org/index.html
Re: help social security disability
Gosh, I'm sorry you got turned down, but don't give up, just get better prepared. I got mine on the first try and within 60 days, even though people had said no one in TN gets SSD without being turned down twice hoping you will give up. They said no one gets it in less than 18 months. I was seeing a doctor who told me no one ever got SSD for BEB and she wouldn't help me because, "Surely there was something I could do." I am an RN and I don't think she would have hired me as one of her surgical or office nurses! Well the people on the BB and from the BEBRF helped educate me on what my rights were, how to use key words in the stacks of papers I filled out, and sent me a packet on how to apply with sample letters from doctors. I gave all this to my "new doctor" who was very supportive. She sent all my medical records and wrote a one page letter summary of my treatment and drugs which had not helped and stated I could not preform the functions of my job due to functional blindness caused by the BEB symptoms. I refused to see the doctors they made appointments for me to see because they were not experts in BEB/Meige and told them I would gladly pay for the difference in the fee they paid to the doctors they wanted me to see if they made me an appointment with an expert. I attached a brochure from the BEBRF and the definition of functional blindness to every form they sent me. In the end I did not have to see anyone else and they just asked for the medical records and the letter from my Neuro/Ophth from Vanderbilt and paid me back pay from the time I had applied in Nov. of that year and ruled that I had been disabled since May of that year when I had stopped working. So don't listen or believe negative junk from a doctor or SS. Keep your thoughts positive, be assertive and educate yourself. Watch the dates carefully regarding appeals and keep the faith. Nov. 19, 1999 post from Judy is priceless...copy and memorize it. E-mail me if you need me to send you my doctors letter if it is not in the SSD packet from the BEBRF. I asked them to put Judy's post and my letter in the packet but I'm not sure it is there. You deserve this, good luck!
Re: help social security disability
I am a new member of BEB and I will probably make a few mistakes but I am just so happy to find someone that has the same problem as I do. I am not happy that you have it but that I found someone that knows what it is. I am 64 and I developed Apraxia of the eyelid in 1998, I went to several eye doctors that did not know what was wrong. I then found Dr. Lowry here in Marion. He explained what I had. I was so afraid. He treated me three with the botox shots and then sent me to Dr. Dutton at the Duke Medical ccenter. He had all kinds of creditials, such as Physician,surgeon,Chief of the university Oculoplastic and Orbital Surgery, many more . He was just great but the shots did not help that much, In 98 he did a limited myectomy on me, that helped a little. When it stopped he operated and put a Frontalis suspension with rods in both eyes. In Aug of 98 he did a bilateral brow lift. In Apr 2000 I developed Cervical Dystonia . What a night mare. I had to hold my eyes open with my hand and then also used my hand to keep my chin off my chest. I could not breath. I was sent to a Neurologist. He explained what it was and that I couild be treated with Myobloc. Well after some studing and talking with my family Doctor here I was injected at the base of the skull with Myobloc. That seemed to help for a few months but then I had to go back and get more shots. I have been back and forth to the two Drs and still having problems. I filed in Nov of 2001 for social security disability. Not really knowing what to do, I didn't get my Doctors to give them all they had. I was turned down. I am now working on my apeal and have received one ltr from Dr. Dutton, still waiting on the other two. My theripist is also writing a letter. I was reading the letter fromDelaine Inman and she mentioned that she could send a copy of her Drs letter. I would sure appreciate it if you would send me a copy. I ahve not went to a lawyer because they are so expensive. I do not underastand how ss can turn you down when you live like we have to. I am very depressed because I use to drive and do things with the church and family now I am more like a recluse. The Dr. put me on Prozac so maybe that will help. I have not driven in three years, that I miss very much. Please if any of you read this and have any suggestions please let me know. God Bless all of you and thanks.
Re: help social security disability
The only advice I can give you is to keep plugging away. I just received my benefits in Dec 2001. I quit working Dec 1999 but had 6 months short term disability and a long term disability policy. My long term requires that you file for SSD so I did. I was denied the first time also. I filed an appeal and was denied again. My long term carrier provided me with an attorney and I went to a hearing and was approved. I now have to have yet another phone interview because I have to apply for benefits for my children (4 and 6). I have been asked to be on a patient panel and speak on the whole SSD process at the Houston conference in Aug on Sun. It took me 18 months but alot of others have been approved much quicker. I'm only 33 and I don't know if my young age was a factor or if states differ but DON'T GIVE UP! The foundation has an information packet they can send you.
Kelly in Dallas
Re: help social security disability
Sue, I live in North Carolina and I know that Marion is also in NC. I too go to Dr. Dutton. I filed for SS disability in '99 and I was turned down twice. I got a lawyer who does not charge anything unless you win and then it is only 25% of your back money. I retired Sept. 10, 1998 but I did not file right away. There are lots of lawyers who will fight for your disability, they know all of the in's and out's and can obtain your doctors recods for you.My doctor at that time said he would write a letter to SS but he had to wait till they sent him the forms. He never got the forms because they went to the "records" dept. The people at SS told me that doctors were too busy to write these letters. After getting the lawyer I did not even have to appear before a judge. They went back to the date I "retired" 9/10/98 and I got my disability approved. I think that they paid me approx 6 month back pay, (the difference between what I received at retirement (at 62) and what I would have received if I had waited till I was 65. I can't remember what I paid the lawyers but it was worth every penny. They only get that 25% for the back pay that one time. From then on you are free and clear. I have been going to Dr. Dutton Since March 2000 and he tried the Myoblock on me but it did not work. He did a limited myectomy August 1 and I had limited success with that. He is in Cary, NC now, which is outside Raleigh. I live in Archdale. Feel free to e-mail me. Just click on my name which is in blue. Joyce in NC
Re: help social security disability
Do not give up. You will win in the end. I have not read any of the other responses as my eyes are not working great today but I can tell you that if you get all the right information, you will win your appeal and you do not need a lawyer. In my case like some others, I got it on the first go around without any hassle. Like Delaine, I put together a complete package and I actually had the doctors send everything to me and I put it all together for SS. I also made sure that if one doctor said something that was contradictory to the others report, I went back and asked him to change it. I was not asking them to lie but to just word things in such a way as to make sure that there was no doubt about my not being able to work any more.Even though SS will say that they do not want other material than that requested, I sent along articles from the Association and also had a complete spread sheet that listed every Doctors visit I ever had and the results of those visits. They included the botox visits and how I reacted to the shots. If you did not keep records, you can get them easily enough from the doctors. You probably can remember every one of the visits enough to put down comments on them. If not, use your immagination and the truth will just flow out. Contrary to popular belief, the SS people are really there to help you. If you give them what they need to do their job, you will get the decision you want. If you leave it up to them to guess or they are unsure, they are like any other human and do not want to take a chance that they don't have to. If I can help further, let me know....long winded Alan
SSDI
Richard:Hang in there! It can be done. I and others have run the gamut of Social Security Disibility and won. You need to appeal the decision and get a physician that is on your side. Please read the attached link, especially the stories by Grace Anne Henry and myself. http://www.blepharospasm.org/disability.html By the way, I also have the same Dystonic symptoms that you do so I can certainly say that I do understand. Judy Blackman
blkmn36@earthlink.net (e-mail me with questions)
Moderator
--modified by Moderator-JB at Mon, Nov 12, 2001, 09:33:40
Re: WELCOME TO RICHARD AND SUE
I can't offer much in the way of help Richard and Sue, but just wanted to say welcome. You have got some good advice already from Delaine and Judy and I'm sure they will work with you both to help you overcome the social security disability denials. I have beb and meige, but live in Canada, so things work differently here. Keep in touch with us, we care.June in Toronto
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