March 9, 2010 at 10:49 pm

Also, remember SSI is looking for evidence that you cannot do the work that you have been doing. I have a friend who is a social worker for the elderly, 62 and over and even though most of them are now straight SS, she emphasized that what SSI is trying to determine for your eligibility is what I stated in the beginning. They pull hospital records, but the docs are not particularly good at responding, so hopefully you have a good relationship with one or two of your doctors.

Good luck. I am 62 and now have a disabled person to take care of plus still working. No rest for the wicked.


December 2, 2008 at 10:50 am

rod, for the record, ivig didn’t work for me either. according to my neuro, who like yours, is a well respected neuromuscular specialist, ivig only works in this condition in about 40% of the people.

as we have all gathered, we are all so different– ivig is the big pharmacy money maker right now. so i posit the notion that it is over-rated. having said that, i know it works wonders for some.

that’s my 2 cents 🙂



April 7, 2008 at 4:45 pm

[FONT=”Comic Sans MS”][SIZE=”2″]Beth,
Check out this thread


Particularly the post by MARKENS[/SIZE][/FONT]


February 10, 2008 at 10:36 pm

[FONT=”Comic Sans MS”][SIZE=”2″]I am fortunate to have a wonderful team of Neurologists, all of whom are of the opinion that the pain is very real, and should be treated aggressively. You cannot concentrate on healing or any other aspect of your life if your pain is overwhelming.
I am currently taking 800mg Gab 4X daily, 20mg 12 hour sustained release oxycontin 2X daily (down from 40mg) and it’s working pretty well, but I daren’t miss a dose of Gab, as I did two days ago. By the time I got home and took it, I couldn’t decide if my feet were killing me or had turned to wood.
Isn’t this the strangest thing the way we all react differently?
Hope you get your dosing straight, and don’t hesitate to ask for stronger medication, like Dr. Parry says, the benefits may by far outweigh the risk of side effects.
May Peace and the Force be with you