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.

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.
trying not to

trying not to but

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.

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.