I would be curious to hear about your neuro's solid plan. I started with symptoms in Jan, and then for almost 3 months suffered with progressive weakness and blood tests that came back negative. Two weeks ago I was prescribed Mestinon which is helping, but I still have limitations. Waiting on the okay from the insurance company to have the anti MUSK blood test. It is very expensive and the insurance company wants a referral from the MD.

As for work, I do still work. It isn't all that bad, but I work part time and I also work at home PT as a medical transcriptionist and make my own hours.

I am trying to do as much as I can and some days are better than most. I know there are agencies that can help you get disability and you pay them when you do, but how much I don't know and it can take a long time. Maybe someone else will have a better answer for you on that. I wish I could go to your neuro, not that crazy about mine, but for some reasons he cannot pinpoint what I really have. Going with MG due to the symptoms more or less and something that happened on an EMG.

How did you download that picture? I can't seem to figure out how to do something like that.

Hello and welcome to the group! Sorry to hear you have MG, but good to hear you are coping.
Disability benefits have been a topic here often. You can see what others have said about it by using the search box at the top of the posts and type in disability and see the comments. Some are quite helpful

The search that it gives you is http://www.dailystrength.org/search?q=disability&t=discussion&community=Myasthenia+Gravis

Good Luck
Russ

In many states the fee for lawyer is preset!this is so clients who in many cases have low funds do not get ripped off . Are you able to work a little to prove it is not the best life for you ,is family medical leave an option with your drs approval. I went on disability years ago for dsomething else. Lawyer asked me to bury them in medical records. It worked first time.

I am beginning to believe I was very lucky at the beginning. My GP knew right off that my symptoms were consistent with MG so he was working to get me in to see a neuro. My symptoms were mostly ocular and bulbar and started quickly getting worse quickly. I ended up going three hours to the University of Vermont medical center emergency room and they did catscans, ice tests, x-rays, tenslinon, and seeing if mestinon helped. They also did all the necessary blood tests. All the tests were consistent with MG and I got a prescription for mestinon, and future appointments with neuros at UVM. This was day one.

Over the next week, the mestinon helped a little, but not a lot. Then, I started having breathing problems that landed me in the emergency room at the local hospital (affiliated with UVM). The result of this was a prednisone prescription along with the express lane to a Neurologist in Burlington. Since I tolerated the 60 mg of prednisone, I didn't have to taper up. This all happened a couple months ago. I am now on cellcept, I take 30 mg of mestinon if I am going to be extra busy, and tapering off the pred (I am at 50mg eod now). BTW, the blood tests came back positive for antibody, and musk negative.

I am not symptom free, but I am working full-time again, and have driven eight hour trips a couple times in the last two months. Back in January when I didn't have enough strength in my mouth to eat a sandwich I never dreamed I would ever feel better again. I recognize that this could all change overnight, but the best thing you can do is not less MG add to your stress. I am also grateful that my insurance hasn't questioned anything yet including tests and the cellcept.

Thanks, everyone! GrecoGirl, I see a neuro at the Lahey Clinic in Burlington, MA. She had been recommended to me by the New England MG group and we were able to meet right away back in 2010. I was back 2 weeks later by ambulance after a nasty flare up. She started plasmapheresis right away, 5 sessions over 10 days. Then prednisone, building to 60mg, 10mg increase every 2 weeks. I wasn't able to hold 60, so back to 50, holding for a month and then tapering as I could, which has taken me 5yrs to get to 1mg daily. And add Imuran, 150mg daily, which my body tolerates well. The topper is my ability to rest when needed, set my own schedule, listen to my body. I have myafacial release treatments every other week to help bring fluids to my muscles and I try to move somehow everyday. And my doctor has been right there through each step, giving her support and input.

Thank you Red! After reading some of these posts, I must say that MG has an array of symptoms. For the most part, I am suffering from weakness. It started in my hands and traveled down into my legs and ankles. I couldn't run or job if my life depended on it. I started Mestinon about 3 weeks ago; it is so-so. Better than nothing, but just helps the symptoms like someone posted, not a cure. I went for an antimusk but my insurance denied it; said they needed a referral from the physician, which now I am waiting on. Other tests came back negative. So I wait. It has been four months of this and now I feel I am no better, no worse over the past month or so. Very discouraging to say the least. I do feel okay most of the time and I am working, but only PT and at home.

So I wait and hopefully things will turn around for me. The neuro said even if the antimusk comes back negative, he may start me on prednisone, but I have to get the test first and I also asked him to check my vitamin D level; again thanks to a post on this site recommending it.

Best of luck with your goals of remission!

Welcome!

TJ