Hey all. I have found this site extremely helpful as far as understanding my Myasthenia Gravis. I was diagnosed Aug of 2008. At that time I had ptosis in both eyes, could not swallow, breathing problems, weak arms legs and problems falling. My Neuro told me what I had and started me on Mestinon and Cellcept as I am a type 2 diabetic. He said he thought he could have me pretty much back to normal in 6 months.
In Oct I had IVG treatments as I was not making progress, and Thanksgiving week I was going up steps,got to 3rd step fell backwards onto concrete carport, was knocked unconcious, entobated, and flown by air to a trauma ICU unit where I spent 4 days.
I have fallen several times since then, still have trouble walking,slurring words, eyes still close when typing,reading,watching tv. I cannot get myself out of tub due to muscle weakness(Now bathe on a chair) cannot get up off of floor or if I fall by myself. From Aug-Dec I was only able to work enough to earn $2,100.,and in Jan filed at my Drs. suggestion for social security disability. As I have been told by others, I like 95% of Tennesseans was denied, and I have hired attorney and appealed decision. He says SS will probably turn me down again, but there was no doubt I would get it when the case went to a judge,
My Neuro has seen me about every 3 months since the diagnosis and has changed my dosage each time. Is this normal? Any suggestions from others would really be appreciated. I thought I would be back at work and somewhat normal by now but am nowhere near it.

Hi and welcome to the site! I am sorry to read how bad a time you are having with MG. I was told I have it in 1991 and been in remission until this past year. I was approved for S.S. in 1991 in under 3 months but in todays economy they would deny anyone S.S. in the hopes you won't fight for it. I am not on S.S. today and haven't been for many years but looks like I may have to apply and most likely be denied although my Dr. says I should be on it. I am not working now but was working part-time for many years. Have you had a thymectomy yet? I know that is what put me in my remission.

Hello all! I am in the exact same boat - cannot work fulltime, yet need my job b/c the insurance is under my name - my hubby has various health ailments, so the only way we are covered is through Bradfield Properties - a real estate office that we both work for!

I am prolly going to hire an attorney to start out with, as I konw it is going to be an uphill battle to get it.....

Anyone on this site have any ideas?

Big hugs!
Erin

Pippi,
I can't believe they have denied you with all the situations you're dealing with!

I still wonder about your knock on the head - I presume having been unconcious you got a pretty serious concusion. Has that been pursued at all? I just wonder if, aside from the fact that a trauma like that can aggravate your MG, there may be some effects from it complicating your condition.

I'm so glad you came back on to post - I've been worried about you with the triple whammie you're dealing with. I hope this attorney of yours can get this through quickly for you, you poor thing!

I am not on SSD, so I can't help with that at all, but do have experience with MG, my brother's diabetes, and my husbands head trauma so I can really feel for all you are going through.

Please stay in touch as much as you can. I for one would be very interested in hearing about what they have said about head trauma, treatment for that as well as how your MG treatment is going.

BIG hugs to you!

Hi Pippi,

Nice to hear from you again, I've been thinking of you. So sorry to hear all you are still going through. Your lawyer is right that it will probably go through when your case is presented before a judge. Hope you start feeling better soon. Good luck and keep us posted on how you're doing. We're all pulling for you. Take care.

Hugs,
Pat

Pippi, I applied for disability in Jan. 07 and was approved and got my first check in April 07. I applied on line and explained in detail how far I could walk,etc. in feet. The more detail the better and I have not been as bad as you but could no longer as a nurse in ICU in Florida. Good Luck to you. I'm glad I didn't have to get a lawyer and let him have part of mine.

Pippi, It is so sad that getting social security for people who really need it becomes this pathetic game. They do the turning you down thing on purpose. I was turned down the first two times too. Then I had my hearing before a judge and was found to be disabled.

It really helps that your doctor brought the subject up first. Make sure you, or rather your attorney, emphasize that during the hearing. The best way to "act" before a judge is very respectfully. Only answer the questions. Don't talk too much. Unfortunately, appearance and how you act is everything in a court hearing. This sounds sexist, but wear something attractive but not too over the top. Slouch in your chair - something I didn't have to "exaggerate" during my hearing. I could barely sit up. Because MG is an invisible disease, it helps for everyone to "see" that you can't walk well, sit well, talk well, etc.

There are people out there who try to get soc. sec. disability who don't need it. Not very many people do that but it happens. So they are always on the lookout for people who do that. It's not fair but that's what they do!

The hearing is VERY important so you have to really think about it. I'm sure an attorney would "prep" you for it.

I hope you get it because it sounds like you need it.

Erin, Check with social security ahead of time to see what amount you qualify for! I believe it is based on how much you have worked.

Annie

For those who don't know, you have to have been declared disabled for at least 2 years before you are eligble for medicare insurance. I was lucky tht I could COBRA my insurance from work at a very high cost though. And yes the amount you get is based on how much and what you made. Good Luck to you.