New member….looking for good doctor

    • Anonymous
      October 20, 2010 at 3:26 pm

      Hi, I am new to this forum. My mother was stricken with GBS 2.5 months ago and is going home from a rehab/nursing home today. Without going into the details of the frustration with her insurance company, I’ll just say that she is forced to go home before she is ready and against the dr. recommendation.

      We are looking for a good doctor for her in the Elizabethtown KY area, do any of you have experience with doctors there for GBS?

      Also, do you have any information on nutrition for healing of GBS patients?

      Thank you all for your encouragement.

    • October 21, 2010 at 11:24 am

      It sounds like your mother is being discharged from the nursing home too early. Insurance rehabilitation days may have been maximized. I know that Medicare only covers 100 days. If she is not a senior, then you are stuck with her private insurer. The question is: can she get proper care at home? If not, she should have stayed put. But, you would be faced with paying that facility privately and that could cost a bunch. Medicaid is an option, but you would have to speak to the nursing home Medicaid Coordinator to see what assistance you can get. Medicaid is a long application process but in some states they will pay after your resources run out. You may also need to consult with an Eldercare attorney to explore your options and protect her resources to the best extent possible.
      Second question: finding a doctor. See if your most highly rated hospital has a neurology center. Ask your other physicians for the best known neuro doctors in your area. You have to dig hard.
      When you argue the case with your insurer be sure to point out that GBS has a long recovery period in many cases ranging from 6 months to two years or more. I hope this helps.

    • Anonymous
      October 21, 2010 at 12:25 pm

      I think many others on this forum will help more with your nutrition question than me and it will depend on the overall health of your mother too. For me, when I was in rehab, I was given a balanced diet supplemented by multivitamin, olive oil, fish oil, and extra protein supplements. When I went back home I have continued with the multivitamin and fish oil and briefly with protein supplment. In my case, I lost all my muscles and so the protein was to help their regrowth. My doctor felt that the olive oil & fish oil would help on the myelin regrowth.

      I am sure others will give you more ideas.


    • Anonymous
      October 21, 2010 at 6:50 pm

      I live in Louisville. My best recommendation for a neuro would be to go to Louisville. I know some non GBS people who’ve had bad luck with neuros in Hardin County. I would think that U of L would be your best bet in your situation. They are a teaching hospital and tend to be more open to new treatments. They also are a bit more generous about payment options, writing off many non insurance funded bills. I believe others from the area on this forum also use U of L for their neurology needs.
      I’ve thankfully not needed a neuro since I’ve moved here. Im 7 years post this month. I’d say Im about 90% recovered. It does get better. Just be patient and continue to read and be involved in the posts here. Ive learned more about this disease from the people here than I have from my drs.
      Best of luck. Feel free to message me anytime since we’re so close. Im more than happy to help if I can.

    • Anonymous
      October 22, 2010 at 6:56 pm

      Hedley, Frank & Mandi,
      Thank you all for your input, it is very valuable and will help in searching out the proper care for my mom. She is 75 but has a Medicare replacement policy, they told us she has the coverage but against the doctors orders, declined her care for more rehab at an inpatient facility. She has 100 days of coverage, so we are still unsure why this all happened. We are gathering medical records so that we can seek professional help in dealing with the insurance company, but in the meantime are trying to get her all the care she is entitled to and needs so desparately – at this time we hope to include some home health care skilled nursing and some outpatient rehab/aquatic therapy.
      She is a VERY healthy woman, 3 months ago she was tossing bales of hay and running outside with grandchildren. She has always been extremely active and healthy – 20 years younger than her age says. We know this is discouraging but she is tough and will fight this to regain her ability to walk again. So, again, thank you for this support and encouragement. We will look for a good neurologist in Louisville Mandi, that is an idea we had not considered.
      Take care,