Any Suggestions for Next Step in Treatment?
 

Hi - I am new to this site and I am very grateful for having found it. I spent many hours Friday reading and getting some wonderful info - thank you to everyone who has shared your journey. I am wondering about the next step to take in my treatment and wanted to see if anyone has a suggestion. I started having neuropathic symptoms in March. I went to a rheumatologist who has given me a clean bill of health. Went to two dermatologists and one told me it might be neuropathy. Went to a local neurologist who did a simple sensory test, said it appears to be neuropathy, and Rx Neurontin - which I started, reluctantly, but must do so because of painful sensations. Also Rx Metanex - and told me to "cross my fingers". I'm finishing my second 30-pill bottle of Neurontin and I'm trying to decide whether to try another local neurologist (the only one listed with the Neuropathy Association is in a distant city in my state) or to go ahead and try to see someone at the closest Neuropathy Center (which would be in TN - in neighboring state).Has anyone here been to the center in TN? What is your feedback? I would like to try to get as much reliable information as possible - for my investment.
Again, I am grateful to have found this website - thank you!

Vanderbilt Neuropathy Center in Nashville - Peter Donofrio and Rebekah Lyons - it is listed on the Neuropathy Association website.
I would appreciate any feedback you can give. My neuropathy is not diabetic - it is related to a single event. I have been converting to a whole/raw food diet - mostly fresh fruit and vegs, beans and brown rice, kale "smoothies", sprouted lentils/beans. I have gotten info from this site on supplements and am taking action for that. The neuro I saw did not have much advice or hope. I would like to try to go to a doctor/center which would take more interset in my case - wherever it might be located.

its hard to answer any questions when the event that is the cause that you refer to is not identified nor your state identified.. There is the jack miller center in chicago, there is a center in jacksonville, shands i believe. there is hopkins in baltimore.

I had laser surgery on my skin and have had problems ever since - in the last two months I've been told that I have definite signs of neuropathy on the area that was treated. I am located in Mississippi.
The Neuropathy association site lists a hospital in New Orleans and the one associated with Vanderbilt. I would like to go as close to home as possible but most of all I want to find a good neurologist. I have been told of two that are here in MS who are supposed to work a lot with neuropathy - I am trying to get an appointment with either one of them as soon as possible. This has been a nightmare trying to find out what has been happening with my body and what to do about it. I have learned so much from this website.

Make sure to take the Metanx on an empty stomach so the B12 is absorbed properly.

this person runs a support group out of shands in florida, which is in jacksonville i believe. he might be able to help you find someone to test and treat you. his email address is prcgeneataol.com he is a very nice guy.

If the laser surgery is the cause of your pn you very well may get better over time especially if you maintain a healthy environment for the nerves to regenerate. That includes supplements, and exercise and staying away from any toxic substances that may cause you additional harm as much as possible. since the laser surgery is a one time trauma and not an ongoing condition such as autoimmune diseases there is hope for you to be able to heal. i dont know much about laser surgery and its complications but that is something you could research. hope ive helped.

I went to Hopkins and was referred to Dr. Khurana, an autonomic specialist who is not part of Hopkins. My PN is mostly autonomic, though I do have sensory issues. Perhaps that is why I was referred out. I was told that they do not do autonomic testing, nor deal with it too often. :mfr_wha:

Thank you - to all of you! I will email the man in Florida.
I have just placed a LARGE order with iherb for the supplements I've gotten info on. I hope to get the NP to run tests for these various levels at my Friday appointment. I've copied the charts from Liza Jane and have filled in everything I can. I have called Dr. Latov's office in NY to find out about the possibility of meeting with him. It is frustrating for a doctor to look at you and not be able to give you some answers - I hope to have some more insight soon.
Thank you again.

I am sorry they could not help you further - have you been to Dr. Khurana?