Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi, I am new to this forum and I am hoping to get an opinion from other people who will understand me better, knowing you deal with MG.
I am 47 and I was dx'd with MG in 1999 after the birth of my 2nd daughter. I also have a history of ITP - low platelets since 1992. My treatments have incl. steroids,thymectomy, splenectomy, plasmapherisis, cellcept, mestinon, IVIG (current q6w) platelets. I also have a 15 year old daughter dx'd with ITP 3 years ago and MCTD 2 years ago (lupus, rheum. Arth, scleredoma).
I have worked for 30 years and been a single working Mom for 15. I have recently started having progressive problems with my MG, breathing, limb weakness, eye droopiness/weak. I have to have IVIG q6w, 5 days straight, 4 t0 5 hrs daily. This has generally kept me going for the last year or so. Now my boss has started giving me problems with time I need for my treatments and giving me fewer and fewer hours. I barely call i sick (2 days sick 3 months ago due to bad reaction from IVIG) so since then she is wanting me to take the whole week off and gets upset with me. I know I am a great worker and I do 100% when I am there and able. I don't complain or express if I feel bad/weak however it has gotten so hard to be on my feet all day at work then I collapse when I get home, nothing left for my kids. My neuro mentioned possibly a temporary disability and increased my prednisone 20mg daily, starting me on cellcept again and cont. IVIG. I am so depressed now and want to know if anybody thinks I should try to see about permanent disability or if I'm being a big baby. I have always worked and taken care of my kids, my oldest daughter sees specialist and I am blessed she is doing fair and resilient.Now, I feel like a failure and so weak and don't know what to do. I can't do anything but work to keep an income and insurance for myself and family. any advice I can take your honestly. thanks
I am 47 and I was dx'd with MG in 1999 after the birth of my 2nd daughter. I also have a history of ITP - low platelets since 1992. My treatments have incl. steroids,thymectomy, splenectomy, plasmapherisis, cellcept, mestinon, IVIG (current q6w) platelets. I also have a 15 year old daughter dx'd with ITP 3 years ago and MCTD 2 years ago (lupus, rheum. Arth, scleredoma).
I have worked for 30 years and been a single working Mom for 15. I have recently started having progressive problems with my MG, breathing, limb weakness, eye droopiness/weak. I have to have IVIG q6w, 5 days straight, 4 t0 5 hrs daily. This has generally kept me going for the last year or so. Now my boss has started giving me problems with time I need for my treatments and giving me fewer and fewer hours. I barely call i sick (2 days sick 3 months ago due to bad reaction from IVIG) so since then she is wanting me to take the whole week off and gets upset with me. I know I am a great worker and I do 100% when I am there and able. I don't complain or express if I feel bad/weak however it has gotten so hard to be on my feet all day at work then I collapse when I get home, nothing left for my kids. My neuro mentioned possibly a temporary disability and increased my prednisone 20mg daily, starting me on cellcept again and cont. IVIG. I am so depressed now and want to know if anybody thinks I should try to see about permanent disability or if I'm being a big baby. I have always worked and taken care of my kids, my oldest daughter sees specialist and I am blessed she is doing fair and resilient.Now, I feel like a failure and so weak and don't know what to do. I can't do anything but work to keep an income and insurance for myself and family. any advice I can take your honestly. thanks
Social-Security dictates the fees, paid to a law-firm - for a successful disability claim.
I don't know the different ways, this might be paid to the law firm.
Here's my experience with the fees.
My first disability check - covered 2 and 1/2 years of back payments. My disability was determined to actually run back 5 years, but SS will only go back, 2 & 1/2 years.
The legal fees, dictated by SS: were about $4500.
This was supposed to be paid to the law firm, directly.
But SS sent me the entire amount.
I had to send the law firm - a check for their fees.
- Ross