• Anonymous
      August 29, 2011 at 11:17 am

      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! I’m left with the dilemma 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??

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

    • Anonymous
      August 29, 2011 at 3:46 pm

      Perhaps your neuro is doing you a favor, for Now.

      Do I understand you are still working?

      If yes, do you have short and, particularly, long-term disability coverage?

      If you do not have it, can you add it?

      My work place insurance only allowed changes during the annual enrollment, or following a qualifying event such as marriage or divorce.

      Find out what benefits you do have while you are still working.

      If you lose your job you should be eligible for COBRA coverage for up to 18 months, longer if you are disabled. However, you may dearly for it.

      It’s a tough position to be in. Good luck.

    • Anonymous
      August 29, 2011 at 4:04 pm

      I’m basically self employed. I’m an entertainer and I’m employed as a singer and magician’s assistant. I’m treated as a sub-contractor in both jobs, so I’m really on my own with insurance.



    • Anonymous
      November 5, 2007 at 6:49 pm

      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.

    • November 8, 2007 at 9:07 pm

      I worry about insurance too. I was told never to be without insurance. If you switch jobs or what not and are not insured, I was told to make sure you have cobra as a bridge until you get insurance. Apparently if you are continuously insured you cannot be denied when you apply elsewhere. I have not crossed that bridge so to speak with my son, but I intend to seek legal counsel to find out what our rights are and what we REALLY should do. I imagine the rules are different state to state. Right now I am worried about the 5 million dollar life time benefit, that can go very quickly with cidp! Good luck, if you find out any info, please post!
      Dawn Kevies mom