Medicare and CIDP

    • Anonymous
      September 6, 2007 at 11:33 pm

      I will turn 65 next month. I am signed up for Medicare A and B. Previously I have been in the military healthcare system. I am not satisfied with the care I have been getting from the Military neurologist. He has a supper cautious approach. When I told him the pain level was getting too high, he said that he would have to review my charts. That was four weeks ago. I have seen him in the mean time and he says he is still thinking about it. Right now I am on 2mg of Klonpin and 50 mg of Ultran [that a drug for the central nervous system – go figure] at bedtime. I now get IVig once every 60 days. Up until three months ago it was once ever 90 days. I take nothing for pain during the day. I am still teaching part time and I cannot afford to be spaced out. Middle School students can sense any weakness.

      My question is, how do I find a neurologist that will accept Medicare and knows something about CIDP. Do I need a referal from a GP or will my records get me in the door? There are not that may doctors in Northwest Florida. Mobile is 2 hours away and Tallahassee is 3 hours away.

      I will appreciate all suggestions.

      Jim C

    • Anonymous
      September 7, 2007 at 10:57 am

      Jim, doesn’t your current neuro/GP accept medicare? Your current doctor can’t get rid of you because you are switching to medicare. Surprisingly enough I’ve had no problem finding doctors here in Colorado who take medicare. I just switched from a neuro and oncologist in Denver to doctors here in Ft. Collins. I also saw a new cardiologist yesterday because of an atrial flutter. As long as they diagnose and code correctly, medicare should pay 80% of the IVIG cost. They will not pay for in-home infusions. I believe they won’t pay either if it is done in a doctor’s office but I am not sure about that. Medicare doesn’t require referrals.

      Of course, I don’t know about Florida. There probably are more people on average on medicare than in other states.

      Good luck and enjoy your retirement. I’ve been retired for 7 years now and don’t really miss working although the last 12 years at St. Olaf college as computer center director was the best job I’ve ever had.

      P.S. you might be interested in my thread “What is your code?…”. It gives the code required for CIDP.

    • Anonymous
      September 7, 2007 at 6:59 pm


      Norb is correct about not needing referrals on Medicare…I was on it for the
      first month before I signed up for Av-Med HMO. I was on Medicare A and B.
      If you choose to stay on it…please get a supplemental insurance from AARP.
      Also take out part D for the drugs. I didn’t take out part D, I ended up in the
      hospital for weakness with new drugs from a new neuro. The deductible is
      automatically $992.00 for any hospital stay.

      Also, they won’t pay for home health or doctor office IVIGs…they have to be
      done in a hospital. Without part D, I paid $800.00 for one month’s worth of
      Cellcept…with Av-Med, when I needed a refill, it was $15.00. On part D, I
      would have had to pay 20% of the $800.00 prescription.

      There is a three-month window to decide if you want part D or get a HMO.
      November 15 of each year you can switch to anything you want. There is
      a gap cover company in Omaha that will pick up your 20%, but you can’t be
      in a wheelchair.

      My neuro suggested that I go on Secured Horizons or Av-Med befoe Humana.
      I chose Av-Med because I had them before when I was working. I am under
      65 and am on disability. I also live in Florida…so if you need any help, send
      me a pm and I’ll look in my medicare books to answer you…they cover all
      insurances, wheher they are advantage plans, ppo’s, or straight medicare in
      every city in Florida…

      Good Luck

      Miami Girl

    • Anonymous
      September 7, 2007 at 10:49 pm

      Jim, I want to stress what Miami Girl said. It is important to get a supplemental insurance. The college where I worked allowed me to stay on theirs as a retiree at a reduced rate because it became my secondary. Little did I know then how high my monthly bills would run a few years later. Beginning of last year they switched all retirees to a nationwide plan called “Emeriti Health” administered by Aetna. It is a non-profit supported by an education foundation. It includes medicare D for drugs and only costs $280 per month. There is a medical deductible and copays for drugs which are manageable. Unfortunally, it is only open to retirees of higher education institutions. But maybe there is something similar for school systems.

      Look into Cobra:
      Cobra would allow you to stay in your current insurance for a while, maybe convert it into something similar to mine. Then you wouldn’t have to worry about getting accepted by another insurance. But I think anyone of them has to accept you even with your pre-existing condition. But you definitely should verify that. I can’t remember all the details from when I first looked into it.

    • Anonymous
      September 8, 2007 at 5:00 pm

      Thank you all for your input. I do have a supplement and a drug plan. I just wasn’t sure how thngs worked outside of the military system.

      Thanks again
      Jim C

    • Anonymous
      September 8, 2007 at 5:18 pm


      To find out whether a specific neuro takes medicare…you simply call and ask.
      Some do not, because it takes months to process the paperwork. Once your
      effective date comes, you are covered. Being on a previous healthcare
      provider, you will get a letter stating when you started and when it ended.
      It is a rider letter to attest that you were covered.

      I ask the doctor’s office if he has any patients with CIDP. If not, I’ll call
      another office…

      One thing with medicare, you will be able to get the best care…I went to the
      #2 hospital in the U.S. for physical therapy…Av-Med wanted me there for
      three days, but because I started out in that hospital, medicare paid it all
      except for the $992.00 deductible and my 20% portion of the doctor’s with
      whom came by to see me…I stayed two weeks. I really have not had any
      problems with either medicare or the HMO I am currently on. HMO’s will try
      to go the least expensive way, but they can’t refuse your healthcare. They
      can drop you at the end of the year if your expenses are too high – then
      you just go to another one or straight medicare.