Hi...

I have been "quiet" in the group. The past years have been difficult for me. Aside from developing major chronic lung issues, there are other major health issues that developed overtime. Sadly, the nerve pain has been consistently part of my daily life. I was hoping that, at least, it would reached a plateau but it does not... reading back my diary when I just started on this painful journey, the symptoms have gotten worse, only that my coping mechanism has probably improved, thus, I can still manage to do things.

When I was new in this group, I might have remembered someone knowledgeable (perhaps glenntaj, mrsd, or echoes???) mentioning Shands Hospital at Gainesville having good neurologists. I have been to 7 neurologists and my experience seemed to be all the same. I am hoping to get some new insights on my condition. If anyone here in the group has had experienced with the center, I would really, really appreciate your input/s. It would be nice if a doctor can think out of the box.

Thank you in advance for your comments.

IPN

there was a person who used to post here who ran a support group in Florida near Shands. I cant remember his name but i think it was his group at the time. its in jacksonville. maybe they could help with suggestions. im sorry to hear that you are not doing better.

JACKSONVILLE
ALAN BERGER, M.D.
KAREN PERRIN, RN
TEL: 904-244-9719
EMAIL: KAREN.PERRIN@JAX.UFL.EDU

MESSAGES AND ANNOUNCEMENTS:
NAME OF GROUP: JACKSONVILLE PN SUPPORT GROUP
MEETING PLACE: U.S. HEALTH JACKSONVILLE
ADDRESS: 580 W. 8TH STREET, TOWER #2, 10TH FLOOR, JACKSONVILLE, FL 32209
TIME: 2ND SAT OF EVERY MONTH FROM 10:00 TO 11:30 A.M. (SIGNS WILL BE POSTED INSIDE ENTRANCE WITH CONFERENCE ROOM LOCATION).

Hi - I think the thread you may have been talking about is this one:

http://neurotalk.psychcentral.com/sh...d.php?t=229971

Check out post #13 by glenntaj - it mentions Jacksonville Shands in Jacksonville Florida.

All the best for finding a good neuro - from your symptoms you may also want to see a respiratory specialist if you aren't already - you may have autonomic issues going on.

--who is quite the expert on neuropathy, and wrote some influential papers about investigating neuropathy causes, worked out of Jacksonville Shands with Dr. Berger for a time.

I believe he's now out in Englewood Colorado.

Still, the work that's been done at Shands has given it a good reputation for neuropathy diagnosis/treatment; I feel bad that you haven't been able to have a good experience yet, but have you been to Jacksonville Shands?

Hello Echoes,

Thank you so much. I will inquire from the group... I appreciate your feedback. I hope you are feeling better.

IPN

Hello bluesfan,
Thank you so much for your time tracing back the thread...I appreciate it.

I am under the care of a Pulmo and Infectious Doctor and on regular monitoring. Every year, my rheumatologist gives me a comprehensive autoimmune panel test, but the results are all normal...at this point, I do not know whether I am glad or not for having normal results.

Regards,

IPN

Hello glenntaj,

My last neurologist in Jacksonville before we moved to Ocala was from Shands Jacksnville. His name was Dr. Michael Pulley. I believe he co-authored a medical article with another neuro. He has a good bedside manner. But when I was diagnosed with Mycobacterium Avium, Restrictive Lung Disease and Bronchiectasis, he sort of suggested that I should focus on dealing with my lung issues...a polite way of saying that he was taking a backseat in my treatment. He did a skin biopsy last Feb 2012 (4 months after mt symptoms started) and came back normal. Last year before we moved from Jacksonville, I had a consult with him and he referred me to a sleep disorder specialist hoping that my problem may be caused by sleep apnea but then again, the result was normal.

I saw a new neurologist in Ocala...well, he said after another NCV and EMG, i have a "mild neuropathy and a bit of fibro". I told him my pain is not body-wide but limited to (both) thighs down to feet. He gave me Aptiom and referred me to hydro therapy... I stopped Aptiom as its starting to trigger my vertigo and I could not make myself awake (even how much I tried). I know this loopiness is compounded by Gabapentin, which I am on since 2011. I am teying to wean off very very slowly from Gabapentin, in fact i am now just on 600mg daily because of noticeable brain fogginess.

Thank you for your feedback...truly appreciate it.

IPN