ssdi hearing
 

I dont think the judge invovled in my case had much of a clue about MG.
He couldnt seem to grasp that I told him I feel stronger in the morning than I do at night, that my eyes work better in the morning then in the evening.
Maybe he did, and he was just grilling me.
I was not nervous one bit, nor intimidated even a tiny bit.
He asked me to average things, and alot of times I just told him I cant average things, because each day is different for me.
I did find it quite disturbing that there was a vocational expert invovled and the judge couldnt get him to supply a list of jobs my qualifications were meant for as an alternate career.
Youd think after close to 40 years at one job, a job that earned me a good living, I would have stuck it out a few more years to collect ss retirement benefits, but was forced to retire.

I feel bad for people who have little means of support and have to go through what I went through today. I guess I was just naive to all this govt insurance stuff.

Did you get your disability award?

AFter the judge said ok, thankyou, and so on, he said offrecord, he spoke with my advocate, it was a pleasant conversation regarding codes, something I didnt understand nor paid much attention too.
When I went to the exit, my advocate came over to me and smiled and said she believes Im going to get a favorable decision.
I hope shes right. I will post it here when I get it.

Excellent
 

This is a prime example of why it is a great idea to hire a specialized SSDI lawyer to help you with your case. At the conclusion of your hearing when she was talking with the ALJ about different codes of law, that could have been the difference between a favorable and unfavorable decision had you represented yourself. is a great resource to find out more about SSDI and can even help connect you with an advocate in your area.

It is good news for you that the vocational expert couldn't find a job for you. That means that he didn't think you could work with your disability. When someone files for disability and they don't meet the guidelines, but can't do the job for which they were trained, then the vocational expert is called in to list jobs that the person can do. It is not good news if you qualify fior disabiliy as far as illness is concerned, because to meet the code you have to be expected not to be able to work for at least a year even with treatment. Most people with MG are denied because you are expected to improve with treatment. So I am sorry you are so sick, but glad that you have this resource since you are.
nc

My situation with regards to working is quite unusual, but possibly there are others like that, so I will share it with you.

I was easily given 100% disability, but I did not want that. what I wanted was to keep on working as much as I possibly can with proper accommodations. I also wanted to receive medical treatment and support according to the severity of my illness and not the fact that I was working. ( the fact that I was working made some narrow minded physicians think that I am much less ill than I am).

It was a very long and exhausting struggle (which has not ended yet), to receive that. I was very fortunate to find partners who were ready to help. The head of my dept. who let me do what I can, until we gradually found the proper niche for me; Other co-workers, collaborators and colleagues; My occupational physician; my family who supported me in all those decisions. And recently my neurologist and respiratory physicians.

I was also fortunate to have some savings we could use, until we eventually get the money from my private disability insurance. (who denied my claims, because according to them I already had MG and knew it when I made the insurance and was working full time (including night shifts) as a physician and mother of two boys).

I find it quite ironical that the insurance company thinks I should have doubted 20 years ago, as a medical student, what two leading MG experts said. According to them, despite having complete (or near complete) disappearance of all my symptoms, without any treatment, I should have known that I have MG and had spontaneous remission for 15 years even though I was clearly told by my physicians that I do not have MG and never had it.

According to the insurance company, I should have known then (as a young medical student), that the MG expert who took care of me and confidently told me that I do not have and never had MG, is a narrow minded arrogant person who still thinks even now, that you can't have MG with no antibodies and a normal SFEMG.
They also think that being a physician I am also a prophet, and should have known that 10 years later, MuSK antibodies will be discovered; and 15 years later, I will have a severe relapse of my "non-existent" illness, and that it will take another 5 years (after my first hospitalization with "MG crisis") until my illness will finally be diagnosed (probably too late for treatment to be significantly effective).

In fact, I not only knew that I have MG. I deliberately avoided proper medical care, so that my condition gradually deteriorated. All this was a well planned scheme to get the money I don't deserve to get from them.

And yes, I do have a lawyer and I am going to take them to court.
But, this is what I believe we all have to deal with, one way or the other.
Fight for our ability and disability at the same time. :mf_swordfight::thud:
trying not to

trying not to :Sinking:but :winner_first_h4h:

Not an easy task, but definitely a worthy one to accomplish.

Im fortunate enough to have a wife who has a solid career and who understands what Im going through.
It makes my life alot easier than most who suffer with illness and financial problems.
My worried mood indicator, well, Ive been diagnosed with yet another health problem on the day of my hearing.
I headed straight to my physician since it was labor day weekend and I wasnt feeling well the week before.
Like the dominos are falling.

I received a fully favorable decision.
The letter stated I would be up for review in 5-7 years, but I believe once I turn 62 I will collect regular SS retirement benefits. Not really sure how it works, have not read all of it yet.

Hi Allem - I'm gong through the process now - have had my first denial and filed an appeal. My understanding is that you can collect disability until your full retirement age and then start regular SS - I think if you start SS at age 62, you will get a reduced amount for the remainder of the time you collect SS. I may be wrong, but that is how I understand it.

Congrats on the good news! I gives me hope!

Congratulations to you. It is all a bit confusing isn't it? I am a nurse who is currently on temporary disability and have been out of work since July due to MG. I was diagnosed via a tensilon test and am seronegative. I mainly have difficulty with my vision, neck, and speaking at this time. I am on mestinon which has helped with generalized weakness, but as you all know every day is different and you don't know what tomorrow will bring.
Does anyone know if you can collect a pension while on temporary disability? I think I am going to have to retire. I am 60 years old and not eligible for SS yet.
I also have an autoimmune disease called primary biliary cirrhosis and recurrent uveitis that has left me with a shower of floaters in one eye further affecting my vision.
Again, I am happy to hear of your positive SS outcome.

SSI Disability
 

I add my congratulations with your approval for SSI Disability. After reading several experiences people have had on this site, it can be a frustrating experience.

Luckily I received approval the first time I applied. I used a lawyer so don't know if that had anything to do with it but I do have two autoimmune diseases and my neurologist was very responsive to the governments request. I received the same approval with a 5 to 7 year review which I believe means the government considers you to be permanently disabled.

Also I understand (which may be incorrect) that the amount you receive for disability will be the amount you will be getting from now on, much like when you retire early (at 62) that amount is the established amount you will receive. Everyone should receive a yearly statement from the Social Security administration which shows what your individual record of income and the SSI payment is for your working history. On that statement, it also shows the amount you will receive for disability.

Also another thing I have discovered, after you have been on disability for 2 years, you are automatically enrolled in Medicare if you don't have group insurance coverage (which I don't - I have an individual insurance policy). At 56 years old I don't really want to be on the imperial government's insurance but I don't have much choice.

Just wanted to give you my experience. Good luck.

Southern Bell
:grouphug:

Congrats
 

I am 64 and drawing Social Security Disability and yes you continue to draw the same amount even when you turn 62 and it doesn't change. I never had a review.

thankyou for the responses.

Hi allenl!
 

WHAT GREAT NEWS!

I;m going to go back with a lawyer and FIGHT for my rights! We were told that my hubby "made too much" to get SSDI, but that is a joke - because we spend so much on meds and dr. visits!

Your great news has me HOPEFULagain!:D

Love,
erin:hug:

sorry erin, my ss di is not based on what I earn. I have worked 40 years and have enough credits in the system.

SSDI Disability
 

If you google Social Security Disability you will find a site that explains alot about SSDI. SSDI is Social Security Disability Insurance and it only looks at your contribution history. There are guidelines about your work history which qualify you for approval. It also says (and I've heard this alot lately) that at least 60% of first time applications are denied simply because the funds are not there to cover everyone and it also says that 80% of those who reapply are rejected. It recommends that you use a knowledgeable lawyer to help you.

SSI is Supplemental Security Income which does include your total family income in order to qualify.

The site that I found is socialsecurity-disability.org.

Good luck to all who are going through this battle. Not only are we fighting these illnesses but also the government. I feel very fortunate to have been approved the first time I tried. I just hope nothing changes in the coming years with the problems that our government is experiencing. We have got to get serious about the country's financial situation.

Southern Bell
:grouphug:

the advocates are pretty smart cookies. They know if youre going to get approved or not.(at least they make you feel they do)
My advocate showed me sheets with statistics, based on my age, health, condition, told me theres a 68% chance I will be approved after my first hearing.
They have it down to a science. I still had to fill out all the paperwork, but for me, it was simple. No reason to lie, just put down the answers and walk into court and rehash the same questions and answers.

I just feel bad for some of the people that were there that day that looked llike they were in pain and sounded as if they really needed to settle or loose their homes or their apts.(they talk out loud to their lawyers, they want you to hear)

Congratulations on your approval Allen!!!!! :D
I've had MG for 17 years and worked for 10 years after diagnosis. It became too much and I filed in 2006. It took me three years to get my approval but I was approved in about 15 minutes during my hearing. I'm up for review next year I believe.

I'm only 45 and am interested in enrolling in some online Christian Ministry courses. Not for a career or anything but for personal reasons and also just to occupy my mind. I want to contact someone at SS to inquire about this but I'm not sure if they will read more into it and discontinue my benefits. No way I can work again at this time or possibly ever. One course at a time isn't much and I can do it when I am able to. Just very confused right now :confused:

I dont know any statistics, but I believe the closer one is to retirement age and the proven illness(having mg is not like diagnosing how much pain one is in after hurting his back at work), is something that dictates the decision for ssi benefits.

stressed out
 

So I just had my first meeting with the social security office, and they have no clue what MG is! the question when did you become unable to work is the first one and my answer is in a completely grey area because most days I can't work but where i work is so flexable I can pretty much work whenever I am up to it, which is usually 10-20 hours or so a week.... but yea the lady i was working with was just like "auto-immune disorders are from birth right?".... I think its gonna take a hearing to get approved

Try not to be too discouraged. I agree it is very frustrating when trying to explain MG to anyone, especially those who you are looking to for assistance at the Social Security office. You sound a lot like me. I had an employer that accomodated me as much as possible by reducing my work hours and even allowing me to work from home. I still wasn't able to sustain employment due to my documented severe symptoms of Myasthenia Gravis. This is what my attorney wrote in a letter to the judge over my Hearing. He also stated that I had to miss work for several days a month due to my IVIG infusions, and the side effects from them. I was unable to tolerate ONE 8 hour work day per MONTH. Those reasons alone were pretty clear that I wasn't able to function well enough to keep a job. He didn't mention all the days that I was either late for work or had to leave early due to the extreme weakness and fatigue.

It sometimes feels as if you are speaking a foreign language when trying to explain MG to those who don't have it!

I applied for SSDI last October and found out today from Allsup (the company that is representing me for the benefits) that I was approved. This was after two denials. We filed for a Hearing, but Allsup requested a decision on the record. A judge read the file and the benefits were awarded.

I worked as a Workers Compensation defense lawyer for 20 years and I thought this process wouldn't be stressful for me. Boy was I wrong about that. What a relief.

Glad the system finally came through for you. It occurs to me that you may be the perfect person to write about your experience - especially since you have vantage points from both sides! Bet it would be an enlightening read!!

yes, when it comes to us, it is very different.
Taking care of patients is not like being ill yourself, and defending your cause is very different then doing so for another person.
In fact in some ways it is even more stressful, because you feel like you are in the wrong role. This adds confusion to an already confusing situation.

I know what you mean. It must be especially hard for you to be a physician with MG. Even though I had a pretty good idea that SSDI would eventually be approved, it was hard going through the process. I was used to being in control.

I believe the medical record spoke for itself. The QME didn't have a clue about MG and it is her job to find a way out of the claim. Once the Judge read the file, the decision was made.

jacob, when I had the hearing, I left with a feeling, wow, the judge had no clue what MG is, since he seemed puzzled by my responses and asked the same questions over and over again, just worded differently.
It was a short while later I realized he was probably just testing me to see if my answers would vary.(I dont know if this was the case, but I figured its his job to make sure who is disabled and who isnt)
I dont think the people down at SS are anything more than paper filing clerks, not bad people, just not really into all the disabilities and are just filing the claims.
Its a slow process usually, so stay patient.