DesertFlower,

I just read your reply to my post and I just had to start a new thread to you about disability. I have learned so much in the last few months and I am paying a heavy price for the many mistakes I've made so I wanted to pass on to you everything I know. I know the fear you are living with, it's horrible. And so I'm writing this out in the hope that I might be able to help you.

1. Apply for benefits right now. Just do it immediately after you read this. Go right on to the social security website and apply online. You don't have to do the entire application just give the very basics. I stopped before I even had to put down my diagnosis (or diagnoses my case) because I wasn't sure. Just get to the point where you give basic information and you have locked in your application date. They will then show a page which you will print which gives all of your information, a case number and a date by which you have to get the application completed, which will be 6 months from today. This is very, very important because this is the date that they will back pay with and this is the date from which they start counting the two years until you can get medicare. The application is free, it literally takes 5 minutes and you have nothing to lose and everything to gain. Please, please, please fill it out.

2. Fire your doctor. Find one who will support you and will not presume to tell you how you feel.

3. Your disability benefits are based on your work history. You have five years after you stop working to apply for benefits BUT the monthly payment that is calculated goes down from the moment you stop working or start working part time. By the time you are 5 years out it won't be even close to being enough to keep you alive. But, the moment you apply they stop decreasing the amount.

4. Myasthenia gravis is on a list of fast track diseases. They have to consider your case quicker than others. The general criteria is that, after being treated for the disease, you still have weakness or trouble breathing. Google myasthenia gravis and social security disability for more information. Also, the allsup site (a company which does disability claims for people) has a page on mg which is helpful and which you can look up. If I remember correctly, the criteria they listed for being able to work was the ability to sit for six hours and stand for two. That is so beyond anything I'm capable of I literally laughed out loud when I read it.

5. Don't do this yourself. First, you're too exhausted to try to juggle all of the paperwork and deal with the doctors. Hire an attorney or a consultant or allsup. They know all the tricks and can help you enormously. And you'll have a better chance of getting your disability awarded.

6. Disability attorneys can not charge you a dime until you get a disability reward. At that time they can take up to $6,000 or a certain percentage (I'm sorry, I forget what that is). They tend to drag their feet to get the payment to themselves maximized and it's one of the most lucrative fields in the business. Nonetheless, you're still better off hiring one. Or maybe you could luck out and find a private consultant like I have. She's a gem and will charge me only $2,000 when we eventually win.

7. Document everything. Pictures, videos, medical records (your attorney can get these for you, don't exhaust yourself with it because with some doctors it's like trying to pull a tooth).

8. Expect the social security department to lie to you at every turn. I stupidly thought that being a part of my own goverment that I would at least get straight answers. Turns out they lied to me about qualifying for widow's benefits and I lost $24,000 over a period of years before I got smart.

9. This is going to scare you, so hold on. It is almost impossible to get disability if you are still working. That means that you are going to probably have to gamble your life savings for a few months. I know it's awful but the alternative is to work until you collapse and then try to fight for this.

10. Be strong and forge ahead. You've paid a fortune for this insurance in your worklife. This is not a handout, it's insurance you've paid for and deserve to get if you are sick and cannot work.

Okay, I think I've covered everything. I hope this can help you a bit. Hang tough!

Ally

Just one more thing:

I'm really, really worried about the fact that you've been working part time in the last year and a half. Your monthly disability award amount has been decreasing ever since and you probably didn't even know it. Please apply!!!!

bluesky,

Thank you so much for all of this information!! I am in the same horrible boat as you and Desertflower. I became symptomatic in 1997, but none of my doctors would believe me or even test me for anything. I was told in 2000 by a team of neurologists that there is no neurological condition that waxed and waned. 10 years later (May 2010) I learned about Mg and realized that I had been lied tol. My symptoms have become greatly exacerbated since April 2010 and I have been fighting to get an MG diagnosis after I learned of MG and the fact that I am an absolute clinical match. However, so far none of my tests are positive so the doctors are refusing diagnosis. Regardless, my mother made me apply for SS disability within a week of me no longer being able to work. The case as gone now where so far, but at least the paperwork has been filed.

I don't know if I can get a disability without a diagnosis or a doctor to back me up, but I have to try. I'm so close to living under a bridge... This is horrible. I feel for all of us.

Best,
Lindie

Lindie, my heart goes out to you. I know exactly what you're going through. It's incredibly, unspeakably stressful to have the constant worry about when you're going to be homeless and unfed. Plus, it's not just homeless and unfed, it's homeless, unfed and incredibly weak and sick and vlnerable. Nobody should have to worry about that. Nobody.

There are many diseases that wax and wane. I've learned through all of my research that there are a lot of odd, neurological disorders. For instance, one I've just been diagnosed with is CPT II deficiency. It's a disorder of the lipid metabolism in every cell. What happens is that if you have low intensity exercise (like walking) for over 30 minutes then your cell metabolism shifts over to using mostly fats as opposed to glucose for energy. Well, if you have a faulty fat metabolism then you crash (sometimes, there are a lot of factors that come into play). So, in a way it's like myasthenia gravis in that it's a fatigueable problem. It has the same randomish pattern that can drive mg patients into thinking that they're crazy. Anyway, that's just one of many diseases I may have and there are others that I've looked into which can cause some of the same issues as mg. On the other hand, there are plenty of folks with mg who don't have a positive antibody or sf emg results. If it's any comfort to you, I *do* have positive antibodies discovered (at my insistence) in 2007 and I fought like heck for almost three years to get any help (and I've been sick for 9).

If you would like to talk about symptoms and possible diagnoses you can send me a pm.

My biggest advice for you would be find another neuro. Do you feel comfortable posting which state you live in? If you're lucky you'll live by one of the few, reliable mg experts. If you can travel to the nearest one it will definitely be worth your while.

You don't need a diagnosis for disability but you probably do need a doctor who will back you up. Officially, they don't require a diagnosis, but in my personal experience if you say a known diagnosis to anyone it helps for them to grasp the severity of your illness, particularly if it's something they know like ms or muscular dystrophy. Mg gets yawns because people don't know about how awful it is. Anyway, I do think a diagnosis would help but if you have everything documented - pictures, videos, strength tests from your doctors, anything and everything - that is supposed to be enough. They're not looking at what you have so much as what you can do so if you can show that you cannot sit for six hours, stand for 2, or whatever hoops they need you to jump through than that should be enough. Of course an mg diagnosis will get you on the fast track. But if you don't have the diagnosis, what can you do?

Forgive me if I'm telling you things you already know. It sounds like you're ahead of me in the disability process.

You're mother is one smart cookie! I wish I'd had a mother to tell me to apply years ago!

If I can help you in any way, don't hesitate to pm me.

Ally