Hi, I am new here. I have some issues that I wanted to ask about here. I was diagnosed with ocular myasthenia gravis in 2003. Since then my condition has worsened. I feel as if I have generalized symptoms. I have absolutely no energy. I have extreme fatigue all the time. I can't concentrate and focus like I used to. I have no mental endurance what so ever. I was on prednisone for years. I have no insurance. My hips need replacing as now as I have necrosis of the femoral ball in both hips. I am currently on mestinon and cellcept. My double vision is tolerable right now.
I lost my job a year ago. The company I worked for wanted me to relocate to Dominican Republic 6 months out of the year. I did not feel comfortable with that and my doc said no as well. I declined. I was laid off 2 months later. My condition has worsened since. I am on unemployment but that is about to expire. I applied for Disability and was turned down. The work I used to do I can't do anymore. I can't find a job that is compatible with my health and pay my bills as well. I am really stuck and I don't know what to do. My hip is ready to go anytime and I have already gone bankrupt when my colon ruptured from the affects of prednisone (2007). I tried to get state health insurance and was turned down. Can anyone guide me to a way out of this mess. Soon I am going to be homeless.

Thank you,

-michael

Michael -

I'm so sorry to hear of your troubles. I know all too well ab the long term effects of prednisone

As you may know, there are attorneys who will work on a contingency basis and you only pay them if your case turns out favorably. They should be able to help you. You should def reapply for disability under the guidance of an attorney. He/she may also be able to weigh in on your prior work situation, too. I am sure other members of this community will have addt thoughts.

Stay strong. You will get through this!

I agree that you will have to find an attorney. Disability payments seem to be withheld until you file a lawsuit. You can probably get back pay for all your trouble.

I was turned down twice for my disability claim, but the 3rd time was the charm. My paperwork was sent to the judge to get a hearing set up and his assistant reviewed my claim and had it approved. I didn't have to go to a hearing. I used a company called ALLSUP (you can find them on the web). I believe they are the largest company that handles disability claims. They don't get paid unless you get approved and SS pays them directly at a rate preset by the SS admin.

They were definitely a big help. Once you are approved for disability, you are automatically eligible for Medicare 11 months after your disability date.

I urge you to not give up and keep trying. I know it is difficult, but it is definitely worth it if you get approved.

Good luck!!

Thank you so much for your replies. I will continue to pursue disability.

-michael

Do you have a confirmed diagnosis of myasthenia gravis with either positive antibodies or SFEMG? MG according to another MG website is suppose to be on a special list of "Blue Book" diseases that has its own criteria for SSA. Here is a link:
http://www.ssa.gov/disability/profes...dult.htm#11_12.


I think you should try one of the private social agencies, such as Catholic Social Services. You do not need to be Catholic, but they can get you some assistance and help you navigate through the public assistance maze.

Good luck
kathie

I'm so sorry for what you're going through. What state do you live in? If you live in one of the states that is expanding Medicaid, you will be able to get excellent insurance as of January 1st even if you were turned down before.

http://www.advisory.com/Daily-Briefi...rs/MedicaidMap

Abby

I am new to the forum and need some help... I was diagnosed with MG Jan 2013. I was on Mestinon and then in May put on 30 mg prednisone. I was perfect, no symptoms at all. Now I am being weened down and am at 12.5 mg prednisone. If I do any work outside I get extremely tired. My balance is off, and my vision is terrible in the sun, even with sun glasses. Everyday is different. I wonder if I am becoming lazy? Am I crazy? Everyday is different. If I'm stressed it all gets worse. Today, for example, woke up washed the car and a couple other things around here and was beat. Took a short nap and woke up worse balance bad. Anyone else feeling this way.
Thanks Chris.

That's one of the frustrating things about MG--it fluctuates so much. What you describe is typical. I hope you will go to your neurologist to get your medicine adjusted, because your symptoms are breaking through. You might be told to take the Mestinon doses closer together, or a higher dose. You might get your Pred dose raised. You could be put on an additional long-term immune-suppressing drug like CellCept or Imuran. And if you get worse, there are infusions (IVIg) that work really well for some people.

If you get a new symptom, or you get extremely weak, or you have trouble breathing, don't mess around. That's an emergency. Go to an ER.

And for goodness' sake, don't fall into the trap of thinking you're lazy or crazy! For me, it's not just that symptoms fluctuate; it's that when they're mild they can be so pervasive that I can't pinpoint them. Recently I've noticed I'm better--and the way I know that is that the house is clean. I mean that when my muscles are really weak, it's clear what's going on--but when my whole body is being mildly affected by the MG, nothing stands out (like double vision, or legs that won't hold me up). I feel like I just don't feel like doing anything. I feel lazy. But it's not true, because when I'm generally better, I do feel like doing things, and I do them. So I say, look, the house is clean. I must be better!

I hope that made some sense. Meanwhile, go to the neurologist!

Abby

Thank you all You all have been so great. Cait, yes I have confirmed Ocular Myasthenia. However my fatigue levels are extremely high. I am good for a couple hours then I need to rest. I have always been a very active person. This has just ruined me. I am aware of the bluebook criteria. I do experience weakness at times. I have had a few episodes of breathing difficulty but not constant. For me the main dilemma regarding employment is extreme fatigue, double vision, and two painful hips that need replacement due to prednisone. It seems that I am not eligible for SSA.
Chris, I experience exactly what you describe! I would not say you are lazy. For me the symptoms morph. I used to wake up feeling refreshed but 2 hours into the day I would have what I call a "Myasthenia crash". When that happens to me I can't do much of anything but rest. Concentration levels and mental endurance completely depleted. Now and for the last few months, I never feel well. Not even when I first wake.