going through cancer treatment with gMG
 

All,
I was diagnosed with MG in 2013, had a thymectomy and was stable on mestinon, prednisone and mycophenolat for about 5 years. I could work and live a normal life. I was sometimes fatigued but I could 'live around' those periods of time.

About 5 years ago, the MG got a bit worse and my doctor defined it as gMG. I could work part time and my employer was just great about accommodating times of fatigue. For the past year or so, I have been on Soliris and that has helped.

Last fall I was diagnosed with Merkel Cell Carcinoma (MCC) and went through surgery and radiation procedures. MCC is a rare cancer with a frequency similar to MG. I am now 'in remission' with cancer but the radiation treatments were very tough for me as radiation alone causes fatigue. I spend a significant amount of time in bed. It seems to be getting better but I can't work and am on long term disability from a private insurance company. The private insurance company is telling me that I must apply for SSDI for my benefits to continue.

The reason I'm writing this is to ask if there are others out there with MG who have been through the SSDI process successfully. Is there anything I should know about the process? Does the Social Security Department know how to properly respond to someone with gMG?

I would greatly prefer working for my income but at this time that is simply impossible. My employer said I can return to work, even part time, if/when I am able. I will do that if/when I can.

I send prayers to everyone suffering with MG. I have lived a fun and high quality life for most of the 7 years since my diagnosis but having two rare diseases has knocked me down for the time being.

Regards,
gr8ful

As much as I didn’t want to apply, I was successful the first time I applied. I was surprised as to how much I earned working versus what SSDI pays (about 1/4). I assume it is based on what you paid into the system and how much you earned. One of the other benefits I received is Medicare and being under 62.5 years old. Try and get an online account, it helps. Try and use any medical terms that your doctor has used. Not that I had to, nor do I know anything about it, but you can always try to get legal help in applying. Good luck! Jim

I also got benefits on the first try. My biggest advice is to not sugarcoat the difficulty you have simply living your life. I also got reports of my swallowing study, my optometrist’s report and even a letter from my boss which stated I was unable to perform my job in any capacity. Ouch! It is a depressing process. However, the relief is incredible when you are approved.

I am happy to help you if need anything. Good luck.

Good to see you, gr8fl Sorry about the cancer diagnosis.

There are supplements like Quercetin (plant derived and well studied) and Lion's Mane that can help with the immune system in general. I hope you have good vitamins as well. Nutrient rich food. :heartthrob:

I got SSDI back in 2003 (2002?). Been a while! Do what these guys say. Have a lot of documentation from doctors (letter from doctor helps). You should go through on the first round too.

I wish you well. I hope you get SSDI right away!

:grouphug:

Annie