I've been told that about length-dependent neuropathy, which I have, but I'm not sure it would work the same with small fiber neuropathy, which doesn't necessarily relate to fiber length.

Thanks for making that distinction. I am not sure if my neuropathy is length dependent or not. It is primarily sensory. It began in one toe and then the same toe on the other foot and has been pretty symetrical in progression. Now it has reached my lower calves with the symptoms characterized by tingling and numbness. Only occassionally is there pain. It has been diagnosed as idiopathic axonal sensory peripheral neuropathy. After an MRI one neurologist believed that it was caused by a bone spur protruding into the spinal fluid at C 5. Another neurologist disagreed (naturally) That is why I was intriqued by your mentioning a spinal cyst. I am a clinical psychologist and have been around the medical community enough to know that diagnostic disagreement is not uncommon. I am looking for a medical facility that provides a comprehensive diagnostic workup. Any suggestions?

Obviously, the Mayo Clinic in Rochester, Minnesota and Johns Hopkins in Baltimore, Maryland come to mind, although neither is very good at taking many insurance plans. (They don't have to--they are tertiary centers.) Mayo, of course, also has sattelite facilites in Jacksonville, Florida and the Phoenix, Arizona metro areas.

Others include the Jack Miller Center for Peripheral Neuropathy in Chicago, the Cornell Weill Center for Peripheral Neuropathy in New York (that is where I go), Massachusetts General Hospital/Medical Center in Boston, the Washington University Neuromuscular Center in St. Louis, Jackson ville Shands in Jacksonville, the University of California at San Francisco Medical Center . . .generally, you're looking for a major research hospital/center where there are facilities that specialize in nerve dysfunction, both peripheral and central. That is not to say one can't find a good diagnostic doctor in smaller clinical practice, but while these do exist, they tend to be very hard to find.

Some areas of the country seem to be severely lacking in neuropathy expertise--Billye's (Silverlady's) trials and tribulations trying to find good service even at the best medical centers in Texas are well documented on these boards (she just came back from Mayo in Minnesota) and I know people in the LA basin who can't seem to find anyone who has a clue about these conditions.

Thanks for the suggestions on treatment/evaluation centers. I understand Mayo has a pretty long waiting list. My soon to be ex-neurologist will not refer me because he thinks that he has covered everyting, Does Mayo require a physcian referral or will they accept self referral with well organized records? How long is the typical wainting period. Also, do they provide cross specialty evaluations of youlr presenting problem I would appreciate any input or direction suggestions since I'm so new at thisg out differential

I understood that it doesn't have to be physcian referral from conversation I had in one of the waiting rooms while I was there, but you will expect to have to wait a long time for an appointment. I waited almost 5 months for mine. It was physcian referral. And..I was turned down at first because they felt they had nothing to offer me. Which was a "graceful" out because they have more people than appointment time. It was truly a miracle that a physcian friend of mine interceded and pleaded the case too that I got accepted.

And I am to go back up there for a two week period of theraphy that one of the doctors wants me to do and I'm having to wait until late April for that appointment.

And it is not cheap. We just got the first of the bills and they run over $25,000.00 all total. And that's not all of it. We're not sure how much the insurance will cover. You also have to be willing to stay as long as they want you to. I went up there for what I thought would be a three day stay and wound up staying one and half weeks. I'm not sure where you would be traveling from or how you would travel. We had to go by a rented van. Travel time and motel/hotel cost bills are coming in too. It looks like the cost of the hotel/motel/car rental/gasoline bills for us are around $3500.00.

Billye