I would appreciate hearing form others how they handled their life when/if MG finally was bad enough that they could not do a days work and had to turn to some form of disability?
My symptoms seem to worsen as day progresses and many days after lunch I really struggle to perform my job as good as it needs to be done. I think if this trend continues I may need to know what options I may have and would like others that have went the route to chip in with news - good or bad?
Unfortunately I work for a college and have for 9 years - I do have a private policy that would pay 66% of my wages for many years, but since I have not paid into SS for 9 years I read on a SS form that you had to pay into it the "previous" 2 years to qualify? I have got 30 credit years into SS so its not like I have not contributed - just not sure I might qualify?
I appreciate any inputs - thanks!
Randy

Randy, I get SS disability. I would call the 800 number for disabiity and ask 800-772-1213. Of course you can get disability. If you paid in for that many years I sure cant imagine any senario that would refuse that other than it just takes time to get it up and going. There is a delay in start up of Medicare benefit part of disability that is 2 years I believe. I went thru that and my doc who documented the disabilty took that into account and adjusted the date of my start of symptoms, not in a dishonest way but to be sure to account for that lag time that existed in the regulations. It seems crazy to get on Disabiltiy and have a delay of 2-3 years till your insurance kicks in!!

Annie59

Randy, I tried to work for a while with MG, but I just couldn't handle the ups and downs, I could work for a while but then had a few big crashes and couldn't work for 3 to 4 weeks at a time, I'd return again and kept going through the same cycle. I could usually work for about 12 hrs per week with MG, but even that was difficult.

Finally decided working was making my MG worse and I decided to take some time off. I applied for social security disability but haven't found out yet if I get it. I haven't been working for a while now (since November I think) and am living on my savings account. I feel pretty good as far as MG symptoms go, not great, but I can actually live, now that I am not working. The brain fog is lifting and I can walk without falling, to be honest it feels wonderful.

It is nice to be able to regularly care for myself and not spend days in bed. If I kept trying to work I think I'd end up in the emergency room regularly. If I don't get disability I don't know what I will do. For now I am doing my best to enjoy my days and heal as much as possible, just in case I have to go back to work.

I recommend for anyone with MG to apply for social security disability, and to stop working for a while at least, it helps to have free time to learn a new way of living. Of course, everyone is different, this is only what I have learned from my own experiences. I suspect anyone would have relief from some of the symptoms if they stopped working.

For me, I hope to return to work part time even if I get disability, but these days spent healing feel so good.

I wish you well.

Much appreciated comments from you both!
Today was a good example for me.
Woke up very tired - I sleep with a cpap machine and breath good during the night and get at least 8 hrs so rest is not an issue. Wife and I rode to work and I dropped her and went on. I had a hard time just walking from my car to my office - very dizzy, very weak. Had a hard time doing anything, shut my eyes for a couple 15 min breaks and that kinda kept me going. By days end I almost could not drive - when I met the wife she drove and I rested - now at home within say 30 minutes I was feeling considerably better - that was 3 hrs ago and while I still have some dizziness and fatigue I actually feel like doing something like this site or TV just a bit invigorated???
So, is it just the stress of getting to work that is a trigger? At times I think there could be allergens that are a trigger - I have a hard time occasionally in big stores with attacks like this and wonder if there is a tie with some odors??
Very hard to pin point but I def feel batter at home or away from work for sure - and I want to comment I like what I do and enjoy working so its not that I have a desire to NOT work for sure??
Randy

Hi Randy! I am on disability for MG, asthma, fibromyalgia, and other health problems. I am on oxygen due to MG, a rare form, so as the day progresses my levels drop lower and lower which has lead to dizziness. I was approved this past July and I applied in August '08 so be prepared for a long wait.

To answer your question, anyone can be approved for Social Security. The only thing that matters is which program. There are two, Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). If you haven't earned any credits in the past 5 years then you will only qualify for SSI, which is a BIG difference from SSDI. This is because they expire, for disability purposes, after 5 years. For example, I stopped working in 2008 and my credits will expire Dec. 31, 2013.

Most states the amount for SSI is only $674, and they count ALL assets and/or monthly income. Even if you win some money from the lottery, the only thing you can "keep" is $20. What they would do is reduce your next month's check. SSDI is a different story, it is based on your work history. So if you win or inherit money your check will still come like clockwork.

So long story short, even if you are approved they can reduce your check because of your private policy and any other income in the household. Btw, if you are married then they can draw money off of their social security. Since I have never been married I cannot tell you how that works.

Good Luck to you and keep us informed!!

For me, stress triggers MG symptoms as do chemicals and perfumes, but working is still the worst thing for me. The stress of work triggers my MG, since any commitment causes stress because I have difficulty following through in any timely manner, which leads to more stress in a work situation.

I want to work very much, so much that I kept pusing myself until I wasn't spending any time with my kids, wasn't cleaning the house, I wasn't doing anything besides working, eating, basic self care and sleeping....I started getting depressed about not doing anything with my family or enjoyable for myself. I love working, it is part of my identity...it was a difficult decision to stop working. I still want to work...

I think stress is a trigger for most of us with MG.

I hope this helps.

Hi Randy,
I am on SSDI for MG and have been for 6 years now. I was diagnosed in 1995 and continued working until 2005. I went from full-time(40 hours a week) to reduced full-time (34 hours a week) hours to working from home to part-time and finally accepted the fact that I could no longer work on a continual basis with MG. That is the issue with most of us. We may be able to work here and there but we cannot work on a continual basis and that is one of the criteria for being approved for SSDI.

I filed in January 2006 and was denied twice (as many people are) I appealed both denials and finally had a hearing in May 2009. My hearing lasted all of 15 minutes and the judge approved my case.

It took a long time to get approved but filing for SSDI was the best thing I did. While I no longer receive as much money as I would if I was employed, the peace of mind and rest for my body is worth more to me than any monetary amount.

My prayers are with you as you make your decision. It is a very difficult one to make but there comes a time when the mind has to follow what your body is telling you to do.

Blessings,
Shari