There is a good discussion on disability on 7/14/2011 started by drakeford. b.

Thank you :)

I can't speak to Lupus, but I can tell you that SSI for MG is a reach. We do get better. We can and do lead productive lives IF we take proper medication. It just takes time.

I've had MG for 6-1/2 years today at 7:30pm. The first three years were pure he!!. I was in and out of the hospital for myriad problems but, aside from those inpatient episodes of 1 to 2 weeks, I never missed any other day of work due to symptoms. I just worked with them. It was a struggle but I was determined.

Even though I couldn't walk, my neuro wouldn't even give me a temporary hang tag for my car, telling me I would got better. He was right! In the meantime, I made myself a neck brace to hold my head up and I wore out the knees on some pants, crawling on the sidewalk when I couldn't walk.

Good luck!

Curt

You can apply on line. They will send you a packet. It won't start until
5 months after you had to leave work. It is simple. Tell the truth.
I din't go in for the interview because I couldn't drive. I definately couldn't work. The process is really simple.

Thanks, I applied online last week and have an interview scheduled for this Wednesday, which I already have arranged a ride for since I can not drive either, they said I could do a phone interview but I decided to just go in because my medical records are a mess because I was mis diagnosed as having narcolepsy for the past 5 years, so I think it will be better to sit down with someone and go through them lol. I'm glad to hear that you were able to get it though, I feel a little more hopeful now, I just really hope I can get it because I am in no condition to work right now...

I have SSDI disability for MG. I didnt want to go throught all of the aggravation involved in dealing with the government so I hired a company called ALLSUP They took care of everything and I was approved on the first try. Their fee was very reasonable.

Rule # 1: do not attempt to take on the giant bureaucracy of the SS - by yourself. They will wear you down. Do - not - go to the SS appointment on Wednesday. Call & tell them, you are too sick to keep the appointment.
Call a reputable SS law firm, instead. If your case has merit? They will take your case, at no cost to you, from your own personal funds. Do NOT deal with a disability law firm, that wants money from you, in advance.
Did you know? SS already has a set legal-fee, already established!! For lawyers - who win your case! I can highly recommend SSLG, Social Security Law Group. They have a web page, with 4 offices around the country. You may know of other competent disability law practices. (I was referred to SSLG, by a social worker.)
And the big thing? The lawyer does all the work for you! You don't have to face the stress & aggravation, of assembling tons of medical paperwork and bureaucratic filings.
Here's the basic premise, with SS disability. You must have had the proper medical testing, in order to gain SS disability. Period. This is why so many patients with debilitating illness - complain about the difficulty and length of time required, to gain SS disability.
Because? Most people, have not yet had enough - of the proper medical testing - to prove a case. This also, usually means? The patient does not yet have their doctors, lined up behind them. (With your neurologist usually taking the lead.) (In my case: my primary-doctor and 2 neurologists supported my claim.)
I was both lucky, and unlucky - in dealing with SS. Lucky? Because of adequate medical insurance? I already had a wheelbarrow of medical evidence, for the lawyer to assemble & submit to SS (yes - it's all done, over the internet - even for your lawyer). Because I had this ton of medical evidence, and an experienced lawyer helping me? My first disability check arrived, 10-weeks after filing. Compare that experience - to what you hear, about people fighting with SS, for years & years.
I was also unlucky, in a way. Because it took so long in general, to get a proper diagnosis? (I have 3 neurological conditions.) I missed out - on almost 3-years of disability payments. Meaning: SS determined that I had actually become disabled, almost 4 & 1/2 years before. SS did send a disability check, going back 18-months (minus the lawyer's set fee). That was the limit, on what SS would do. But these days? The monthly check arrives on time, every month. (You won't get rich, but the monthly payment can often make the difference, in keeping a roof over your head.)
If you don't go to a SS disability lawyer? Well, the odds are not with you. It's likely you will be denied. Then you must find a lawyer, to appeal that decision. And THAT is what takes years.
That's probably enough, for this short space. Please feel free to write a message to me, with any further questions.

PS: forgot to mention. At first, I did try to handle my own claim.
When I missed several appointments, due to illness? I then received a letter from SS, stating my claim was denied, but could be appealed.
The claim was denied, not - because of lack of medical evidence.
The claim was denied, because of a ridiculous technicality!
I hadn't jumped through the right hoop, at the right time.
That's when I called the SS disability lawyers. They straightened things out, rather quickly.

Hi, not to put you off, I live in Malta and have been trying for 2yrs to get disability pension for my 20yr old son who also suffers from MG. At times he can't even get out of bed and stand up. He is unemployed and has never worked. He has been with this condition for the past 8yrs. Unfortunatly here in Malta they don't consider MG as a disability. Hopefully in your country they do. Wish you the best of luck :)

I was approved rather quickly. I filed my own claim while on short term disability from my employer, I had a check within about four weeks. I did not have to go to a SS physician or any hearings just woke up one day and had a check in my account and received my approval letter a few days later. My problem now is with my Long term disability company, they have stopped my benefits stating I should be able to work full time. There is absolutely no way I can work it wouldn't be fair to me or the company that happened to hire me. The stress of knowing I had to push myself I would stay in an exacerbation state which would lead to many days off. My claim is in appeal now and I know God has it in control. Good luck to you!!!

As a medical social worker with neuro pts I have successfully gotten benefits for all of the pt's I applied for. If your docs are not clear with a diagnosis that is a big problem. Your docs also must be clear as to your current status and prognosis. my neuro is VERY clear that my working is too stressful and I am at risk of a faster decline in function due to this. The medical records submitted need to be gone over with a fine tooth comb. Then all should be OK. My concern is how does one survive while waiting for this money?? Good luck to you!

I applied for SS online. I did not get an attorney. I just decided I would try the first step on my own. I applied in June and started receiving SSI in October and my SSD started in January. The only time I had to go into the SS office was to verify the income I had for the past year. It was basically to determine if I qualified for SSI and how much.
The only advice I can give you is to make sure your medical records are complete. The financial assistant at the hospital helped me with that. She basically sent them everything I had. It may have been luck, but the process was pretty easy for me. I was fortunate to have my parents help while I was waiting for my first check.

I'm now off work on short term disability for almost 4 wks now. I stayed on my feet at work with desk work in between. Working was hell for me with worsening MG. It made my condition worst, even though I was using a cane.The fatigue, balance issues and gait abnormality made everything insane to say the least. I'm new to the MG world and I've noticed that MG affects everyone differently and if yours ( in addition to Lupus) is such that you need to go on SSD, then do it. I tried to hang around but when MG peaked at its ugliest, I just couldn't do it. I'm usually fast and I'm constantly on the go.Everyone that knows me knows that I'm tough and it takes a lot to knock me down. MG did it. Please take good care of yourself and do what's best for your health. I hope all goes well. Best wishes.

Hey Charlotte. is your insurance company that has denied you cigna, that is who im fighting for my long term disability. ........ Ashley, my wife has been turned down here in Texas 3 time for her disability. we are now waiting for the court system to give us a date to appear infront of a judge, and we do have lawyers fighting for us. my wife has had to stop working 4 years ago. bad rheumatoid arthritis and fibromyalgia, she spends alot of time in pain and in bed......for some the rewards of disability payments come easy but then there are thevones that seems like it takes forever to gt approved. but hang in there hopefully it will go fast for you.