I need a good Neurologist- I’m so confused!

    • Anonymous
      April 23, 2011 at 11:45 pm

      I need a doctor who REALLY understands CIDP. Just when I think I find someone, they make a costly mistake, or seem uninformed regarding treatments, etc. Most hospitals and doctors know very little to absolutely NOTHING about CIDP. Since I broke my foot, it has been a nightmare. I’ve been to my Primary Care Physician, an Orthopedic Surgeon, and now I need a Neuro. A good one. I live in mid-Michigan. I loved Mayo Clinic in Minnesota but it is a 30 hour round trip for me. I cannot fly. There must be ONE good Neuro in Michigan. Or close by. Help!

    • Anonymous
      April 24, 2011 at 2:47 am

      Have you tried Dr. Lewis or contacted the neuro dept at U of M?


    • Anonymous
      April 24, 2011 at 10:24 am

      I had Dr. Tweeney from UofM . Dont know if he is still there but he was good and experianced

    • Anonymous
      April 24, 2011 at 10:30 am

      University of Michigan
      Neuropathy Center

      Eva L. Feldman, M.D., Ph.D.

      Timothy L. Funckes, R.N., B.S.N.
      Nurse Coordinator

      Taubman Center 1914/0316
      1500 East Medical Center Drive
      Ann Arbor, MI 48109

      Tel: (734) 763-7274
      Appointments: (734) 936-9020

      “[I]The Association-designated Neuropathy Centers of Excellence are hubs of neuropathy care and research led by center directors—pioneering neurologists in the field of neuropathy—working closely with The Neuropathy Association to ensure patients have access to compassionate and coordinated care and the resources they need to battle neuropathy.[/I]”

      the complete list is here: [url]http://www.neuropathy.org/site/PageServer?pagename=Resources_PNCenters[/url]

      for a list of doctors who have ‘signed up’ with the org see:


    • Anonymous
      April 24, 2011 at 11:36 am

      I apolgize beforehand for busting in on a thread like this. I have searched everywhere and even tried to contact my BC/BS provider (as I have had insurance with them for 30 years…and could not get one iiota of simply ‘what if’ detail from them) for help. The ‘story’ is as follows: I have a dear friend from Eastern Europe who moved to America a couple of years ago. Due to difficult work circumstances he has been unable to afford insurance (he now understands the necessity of such despite his limited income). As fate would have it he had to check into the local emergency room (and was ultimately admitted to the local hospital) on Christmas Day 2010 and was eventually diagnosed with ITP (Idiomatic thrombocytopenic purpura – which is basically an unknown condition wherein one’s immune system attacks/destroys one’s platelets). Normal platelet levels (I believe) run about 120,000 to 150,000. His were 1000 upon entrance into the hospital (he was bleeding from eyes, through skin, in mouth, in urine, etc)…and subsequently he was administered a 140units (infusion/bag) of Privigen (10/gm per 100ml)…which when the dust settled cost $44,000.00. He also had a number of xrays/test and spent 4 days in the hospital at a charge of $1185/day.

      I was able to help him with information about usual and customary (like BC/BS – Blue Cross/Blue Shield) insurance allowances for the hospital room. For instance, when my wife was in the hospital some time ago…they charged about $1100/day for her hospital stay per day…but BC/BS only allowed about $300/day and the bill was considered paid in full. I am hoping that someone might be willing to share with me some kind of similar feedback with regard to how thier insurance (hopefully something like BC/BS) handled the charges from the hospital for Privigen infusion. I don’t think anyone is privy to how these behind the scenes ‘allowances’ are derived. But for instance, when I had achilles tendon surgery last year…the doctor charged over $10,000.00 for the actual surgery and again BC/BS only allowed him payment of about $2600.00. Again the bill was considered “Paid in Full”. I’ve got to believe that there are similar situations or ‘allowances’ with regard to the payment for Privigen through powerhouse insurance providers like BC/BS.

      I am requesting this information so that my friend can have at least some sense of usual and customary insurance related/established allowances with which to barter with the hospital. If anyone has information wherein they were administered a similar transfusion of Privigen…and were charged a similar amount (HCPCS billing code for Privigen is J1459 ($275 per unit…140 units = $38500.00)…and then their insurance provider paid fractions of this cost (say 20-35%) and the bill was considerd “Paid in Full” and would share this detail with me…it would be GREATLY appreciated.

      My friend’s life was saved with this Privigen protocol and he wants to honor payment. However, he is simply a waitor in a restaurant…and even sends portions of what little money he makes home to his parents in Romania…and will never be able the pay his hospital bill of $62,000.00+. He would like (to offer/negotiate) to pay whatever is usual and customary (like possibly BC/BS would do) if at all possible. Again, any detail and/or helpful information that anyone can share will be very GREATLY appreciated.


      Bobby Griffith