I saw my neuro and inquired about this. He has recommended that my PCP send me for one as the facility my neuro is associated with doesn't do them. I'm trying to get this done ASAP and I should also note that my neuro is advising my PCP as he isn't in my local area. Does anyone know who/where/how to get this done? Any particular lab, facility, etc...can I have a local dermatologist do it and send it somewhere in particular? I've heard that there aren't many labs that do these and I should mention that I'm in the southeast.

Thanks, any info would be greatly appreciated.

Hi,

Can't understand why your neuro couldn't have directed you to a facility that did skin biopsies rather than shining you on to your PCP. However, that doc might be able to find a facility for you.

Do you happen to live reasonably near a Cleveland Clinic facility? Mine was done at the Cleveland Clinic by a neurologist. However, even at the main campus, she was the only one who did them. I live in suburban Cleveland.

Good luck,

Sheltiemom

There is a Mayo in Jacksonville Fl if that is close for you?

I wish I understood why these docs do what they do, but sadly I don't. There is a Cleveland Clinic about 500 miles away, so thats out of the question, but thanks for trying.

Its several hours drive and I would go except that my insurance won't cover it so I'm kind of stuck. After doing some calling around today, I was able to find a dermatologist who can/has done it and has a lab which can handle these so I'm all set.

Thanks for responding

Glad you've found somebody who can perform the punch biopsy (not just a skin scraping). Is the dermatologist also going to analyze the specimens or send them out? Three sites are biopsied - just above the outside ankle, a few inches above the knee on the lower outer thigh and then probably 6 - 8 inches above that on the outer high. So suggest you ask the dermatologist whether that's how he/she does them.

A 500 mile drive would take you about 7 - 8 hours, so yes that would be "out."

Let us know how it goes, and good luck!

Sheltiemom

I spoke with his nurse and she said that he does the punch biopsy and sends it out to a lab to be analyzed. I'll inquire about the locations when I'm there next week and I'll let you know. Thanks for the information.

Johns Hopkins has a mail-in kit that they send out, with instructions on the procedure, (which any PCP should be able to follow), and the specimens are sent back to JHH and analyzed by them.
BTW - Hopkins was the very first to do this procedure, and does analysis in-house. The interpretation of the results is done by some of the best neuros in the world.
Contact Hopkins neuro dept for instructions.

Yes, I had mine done at my neurologist's office in Annapolis Maryland. I understand from him that there are only a few labs that analyze this type of test. My Neuro used a kit and sent it to Therapath Labs.

http://www.therapath.com/

Good luck to you...

So after being assured by the nurse that everything would be set to go, my appointment was a bust. The doctors office did end up contacting Johns Hopkins and the kit will be here Monday and will do the biopsies on Tuesday. The doctor was great about it all, which I kind of expected since I've been seeing him for years. I really wanted to accomplish all of this in one appointment. Maybe they'll file it as only one.