:wink:hi ginnie, i'm not sure if i'm doing this right? it's my first time here. i was recently diagnosed with sensory neuropathy in the feet and legs. i have just started on neurotin (Gabapentin) so i haven't noticed any results yet. (3/4) days ago. what worrie's me is i was born with a kidney disease, and very sick growing up, and as i have gotten to the point where i had to go on dyalisis. then thankfully my sister was a perfect match and gave me a kidney!!! it will be 13yrs. this july 9th. i have endured all kinds of things since my transplant, but no complaints here...now i am diagnosed with my neuropathy. i really not happy with my neurologist, and don't know how to go about getting a new one? any info. would be very helpful. thanks,

maureen

Welcome to NeuroTalk:

Some of the transplant drugs may cause neuropathy:

http://informahealthcare.com/doi/abs...2X.2011.573893

This link is for cyclosporine.

Prograf is another.

I am not finding much on Cellcept causing PN however.

Did you discuss this with your transplant doctor?
When people have serious issues like yours, there may not
be an alternate therapy if the PN is due to the drugs.

Have you had your B12 measured? It should be 400 or above in US units. Sometimes low B12 sneaks up on a person, and doctors may not test for it or when they do they use the old test ranges, and miss the real lows. So it would be a good idea to see if your B12 is adequate. When low, neuropathy begins.

Hi maureen,
For specific names, ask people you know/meet/trust, your other doctors and their staffs, your insurance company may have suggestions... and believe it or don't, even Angie's List.

For articles/advice, Google: "finding a good neurologist" (with and without quotes).

Try to find one who specializes in (limits their practice to) the specific condition you're seeing them for (e.g. PN, or even your specific type of PN). Once you've found a few candidates, call their offices to see if they're accepting new patients and/or under what circumstances (sometimes they say no, but will flex for certain cases, doctors' requests, etc.) Depending on your insurance, a referral may or may not be required. If so, ask your PCP for a referral to that neurologist.

HTH,

Doc

I am here to say hello and try to help you. I read the post you replied to. Others will try and help you too. You are not alone in this big search for a physician who will help you the right way. Call your local hospital is one way and ask for a patient representative. Often hospitals have ways of connecting people with new physicians. I had been looking for a new pain specialiast, I had to. It was my pharmasist who has known me for many years, who named several doctors I might go see. I had four lined up, and found the doctor on #3 that I was confident with. The most important think I learned was not to give up. I was so very disapointed in the first two encounters. One of them gave me a lecture I did not need or want. Your PCP also may have access to names for neurologists. In my case my PCP did not know who to send me to for help. Call your local womens center also, ask for an advocate. There are agencies in many communites that can help with your search. Get on line, and start investigating the doctors who are listed even in the phone book. There are web pages about many of the neurologists, and patient commments about them on line. I am in no way telling you this is easy to do. It isn't. finding a physician who you have confidence in is frustrating, and time comsuming. I still don't have a second opinion with another orthopedic surgeon. I am waiting for my new pain specialist to get me a referral. I know how this searching is, and I sure am hoping you remain strong, and move forward. Try some of these ideas. If you still have trouble give me the location you are in, what big towns you are near, and if there are any teaching institutions in your area. I can help you with research too. Don't give up, find that doctor, who can help you deal with the neuropathy. I am here for you, and so is NT. I come here all the time to get help for myself. I have found a loving community who support me in all that I have to do to keep my life on track. Keep coming back here, and PM me anytime you want. That Private messages is in the top right hand corner. You just click on it, and there will be a list of fuctions on the left side of the page. Click on "send New messgae" write my name ginnie in, and you will get me on private messaging. I can also give you my e-mail from there. Have heart as you move forward in your decisions. ginnie

you can also go to the neuropathy association website and look up support groups for PN in your area. they should have some ideas on who are good and bad doctors

I have small fiber neuronopathy:ganglionopathy diagnosed after skin biopsy. In immense pain 24/7. Ivig helps relieve some of it.


QUOTE=adelina;853323]Hi! Welcome to the site! You are wonderfully educated and are very impressive!

I have been diagnosed with ganglioneuritis/ganglionopathy for three years now. I was diagnosed by a university doctor who really enjoys helping patients like us and has quite a number. But I have been told that there was no treatment for it and that it traditionally goes away on most patients within six months. I have not been that fortunate and have been only able to treat for the pain caused by it.
There is at least one other person on this site and maybe this person will be able to help you. They are much more educated than I and have gone through more testing than I for it.

Feel free to contact me anytime to talk further and again welcome here - it is a great resource for education and friendship![/QUOTE]

Hello...

I have been diagnosed with autoimmune ganglionitis and would be interested to hear about your symptoms as well as how you were diagnosed.

I am sometimes given prednisone when my symptoms flare which seems to help...IVIG has also been mentioned

thanks