CIDP friendly neurologist in Orlando

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.

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: http://www.tampabayneurology.com/schneider.shtml

Or this CIDP specialist (considered a CIDP Guru by some) 30 miles closer in Tampa: http://health.usf.edu/medicine/neurology/faculty/gooch.htm

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

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.

Hello
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. http://www.orlandoneurological.com

Hope this helps
Karl.