CIDP friendly neurologist in Orlando

    • Anonymous
      September 17, 2013 at 11:34 pm

      I had a lady contact me yesterday about finding a neurologist in Orlando that is familiar with CIDP.
      She relocated to Orlando from Buffalo NY , she has all her test results , MRI etc from her doctor in NY who has since relocated to Toronto.
      Any doctor she has spoken to in Orlando wants to re do all the tests, which to me sounds like a money making racket !

      Any input on the matter is be greatly appreciated. 😀

    • September 18, 2013 at 2:24 am

      I think it would be nearly impossible for anyone in this forum to differentiate between a ‘money making racket’ or good physician practices. Nor do we know how old her tests really are or how reputable the testing organization was.

      I would not think that doctors in Orlando, who spent many years in med school at no insignificant cost, would be out to scam her. If they were, they wouldn’t be doctors for very long and the various websites that track doctor performance for the public would be all over it.

      If she has a financial hardship due to lack of income, funds, insurance, etc. most doctors will work with patients and she should try negotiation to reduce fees and establish a payment plan. Maybe this would be a way of convincing the doctor to skip tests that are not that important to HIS diagnosis.

      CIDP, if that is what she has, can be a changing disease that warrants retesting every so often … if for no other reason than trying to establish if she is better, worse, or the same. Nerve conduction studies may need to be made regularly to help determine the extent of myelin damage and help the doctor choose the best treatment plan for her.

      CIDP comes in many different flavors and has several variants. Knowing exactly what she has is important to pick the best possible treatment plan. Perhaps her previous doctor was less experienced with the disease; and his diagnosis, based on incorrectly configured tests and/or incomplete interpretation of test results, has left her new doctors a bit in the dark about the accuracy of the diagnosis.

    • Anonymous
      September 18, 2013 at 2:42 am

      It has nothing to do with finances etc. Its about the competence of the doctors. The doctors want to disregard all of her tests from outside Florida and re diagnose her. If you have ever lived in Florida you will know what I mean. Incompetence is rife here, testing and re testing , its becoming a joke here.

      I spoke to a few people from the GBS/CIDP Foundation International and they could not recommend a doctor in Orlando as they are not up to the task of dealing with GBS /CIDP , you will find very few doctors who have heard of it, in fact the only doctor i have come across in the 18 years since I had GBS was my optician !!!

    • September 18, 2013 at 4:10 am

      As you indicate, there may not be many good GBS/CIDP specialists in Orlando. However, there are in the Tampa area and the GBS-CIDP Foundation has an office in Orlando. They may be able to provide doctor references (or maybe this is one of those you spoke to). Contact:
      Ian Harper
      Orlando, FL 32837
      407 850 9402

      If your friend doesn’t mind driving ~105 miles to Clearwater, this doctor specializes in GBS/CIDP:

      Or this CIDP specialist (considered a CIDP Guru by some) 30 miles closer in Tampa:

      There does seem to be more specialists in the Tampa area. Maybe you should contact the GBS-CIDP Foundation office there too:
      Nancy Roberts
      Belleair, FL 33756
      813 300 3800

    • GH
      September 18, 2013 at 4:18 am

      In my layman’s opinion, there is no point to doing another (expensive) MRI. The MRI is done to rule out other possible conditions when making the original diagnosis. Once the diagnosis has been made, treatment of CIDP does not require more MRIs. I would not want another MRI if I had to change neorologists. Actually, I did change neurologists, but not states. They knew each orher and my treatment continued without having to redo anything.

    • October 27, 2013 at 8:31 pm

      In reading your post. Most dr. Will want to do there own tests unless there can get access to the persons records.
      I have had CIDP since 2004. And the only Nero. In Orlando That was able to diagnose it was dr. Daniel Jacob at.

      Hope this helps

    • Anonymous
      October 29, 2013 at 2:44 am

      Thanks Karl , I will call them tomorrow . Jim-LA , I am Ian Harper the liaison in Orlando