My neuro called to discuss my condition and emg results. She thinks I probably have small fiber neuropathy (related to an auto-immune disease) which may or may not get worse. However, since all my test have been basically normal she isn’t writing down a diagnosis for me. She say’s this is because if this is something that continues to get worse, I may need treatments like IVIG or Cytoxin…and if she writes down a diagnosis, I may not be able to get insurance to cover it.

While I appreciate her trying help, the problem is…where am I ever going to be able to get affordable insurance…not to mention for a pre-existing condition:confused: I mean..that’s the reason I don’t have it in the first place!

So..now I’m left with the dilemma of..how am I going to keep working? I’ve had to cut my hours because I can’t keep up and I doubt I could file for even a partial disability without a diagnosis!

Do I just need to get another opinion? I hate to have to go through all this expense again just to get the same answer. Any ideas??

Thanks!
Lori in Fl (I’ll sign off this way since there are two Lori’s here;) )

When I was treated for GBS 2 years ago I was fortunate enough to be on a short term health insurance plan. Needless to say, they didn’t offer to let me renew the temporary insurance. Now I’m self employed and I need to sign up for health insurance. I’m interested in hearing about what I’m likely to encounter while trying to find insurance.

Am I likely to be turned down? How will the cost compare to the standard advertised rate? Will it cover GBS, or things related to it that might happen down the road? Can anyone recommend a provider?

I’m 29 (in the US) with no residuals that I’m aware of, so I only need catastrophic coverage. After seeing the cost of GBS, I would like to find a plan with 100% coverage and a high deductible, or some kind of cap on my out of pocket. Even 20% of the bill from the GBS would have bankrupt me.