New PNE in AZ

[biff0101]

Hi everybody and thanks for letting me post here on this forum. This all started for me in October 2011 when my wife and I went SD for our 25th anniversary. I noticed what I thought was chafing on my inner thighs on the trip. Golfing, walking and driving were a task but managable. Come November I visit my doc she gives me Eucerin cream which does not work. The "chafing continues and holidays come and go and I start to get some minor thigh pain, groin swelling, etc. I start to lose some weight thinking this would help my thigh issue. I use a topical cream to reduce celluilite. I use powders, creams and no use on the chafing. The pain starts to increase in mid February after a golf outing. Sitting at work, wearing jeans and weraing compression pants during my work outs are becoming impossible. I visit my doc again on base and she gives me a topical steroid which does not work. My stress and worry go through the roof. I can't sleep so visit my doc again and get Mobic 7.5MG and a sleep aid. Both last about a week and things seems to digress around mid March and I have to go to the ER. Here I get and MRI on my lower back and pelvis. All comes back normal with good blood work. Also had a lower lumbar X-RAY and EMG not to include the penundale nerve, go figure. These tests come back normal also. My bi-lateral burning, groin swelling and anal pain increase and it dawns on me that the "chafing is actually part of the PNE issue. My doc thinks I have a trapped femoral nerve. The EMG proves her wrong. I know what it is, it is PNE and I need to do something about it. Another vist to my doc and she gives me Neuratin 300MGS and Ambian for sleep. These are working but barely at this time. I try to convince my doc it is PNE but I get a referral to a generic neurologist and have to wait another 2 months. Standing is ok, sitting with a toilet cushion is hardly working, my job is getting harder by the day and driving is not good. I am sure you all have heard this before. I live in Tucson, AZ and I have decided to to go see Dr. Hibner in Phoenix for a consult since my doc will not refer me there yet. Of course this visit is on my own dime but I can't wait anymore. I know I am a long way from even thinking about surgery but if I have to do it I will. I would not wish this on my worst enemy and thank god I have a supportive family and friends. I will keep you all posted and please give me your thoughts...thanks Jim PS I also have muscle pain in the legs, my hip pointers hurt from sleeping on them, thigh twitching and some burning pain in the waist area on the skin.

[helenlegs 11]

Welcome biff,
Glad you have found HOPE. Finding this forum has made a massive difference to so many people including me, thankfully . I'm sure you will find the same as there is such a lot of good info on the home pages etc.
Dr Hibner is a very well respected PN doctor so I think you have made a good decision to see him although I hope that your insurance can take care of any other treatment that you may need . I understand your need for some speedy progress.
Being armed with the extra knowledge and support that Hope and the people here can provide, can't hurt either.
I have read a lot about Dr Hibner, and must say I am very impressed. He seems to be above all such a caring and insightful person, he is one of the few doctors who have really taken our problems to heart and strives to improve the situation of sufferers with his surgical work and publications. I heard him an blogtalk radio a while ago (last year) http://www.blogtalkradio.com/pelvicmess ... -hibner-md
I hope you find answers to help manage your pain. Getting a better medication prescription might be a good place to start and give you better help at the moment.
See Attachment below. It has a section on neuropathic pain.
A combo of antidepressant (I take cymbalta) and gabapentin or pregabalin/lyrica sometimes helps. This is always a good place to start but there are many conservative treatments that may help too.
Take care,
Helen

[biff0101]

Helen, thanks for the support and I was looking for any updates on here if anybody has had any experience with TIRCARE on this matter.

thanks
Jim

[Violet M]

Jim, that's pretty sad that your doc won't refer you out of network since it sounds like there is no one in-network that treats PNE. Can you appeal this?

Have you been evaluated by a physical therapist yet? It sounds like you could have more going on than just a simple pudendal nerve entrapment. You might give Loretta a call and see if she knows any good PT's in Tucson. http://pudendalhope.org/node/63#AZ

Best,

Violet

[biff0101]

Violet, thanks for the words and link. TRICARE just today approved my initial consult with Dr. Hibner but rejected a bunch of other requests. But I will at least take the consult and we will just go from the there. I guess you have to crawl before you can run.

[biff0101]

Also I just found out that the office that Loretta works for does not take TRICARE so I am screwed in the regard. Just gotta keep plugging away. Also just an update, I went to see a derm specialist today and my visit lasted no more than 15 minutes. He immediately ruled out any skin issues and said my pain was probably nerve related. Another one bites the dust.

[janetm2]

Jim,
Keep plugging away and you will find out what is wrong and how to treat it. Hopefully get some pain relief sooner than later!
Janet

[biff0101]

Janet, thanks for the kind words. I am sure I will figure something and my hope is I can find some relief since this agony is only 6 months along. More to follow.

Jim

[biff0101]

Can dental pain be a by product of this evil stuff?

[biff0101]

Update, my doc here on the base is pretty much out of options at this point (she stated she has no idea what is causing my pain). I am still getting the stabbing stuff in the groin so now I am taking Gaberpentin 600MGS at least 3 to 4 times a day now to include Tramadol for sleep now. I am about of Ambien so it is on to Tramadol for now. The Gaberpentin helps but it just gets me by as I try to ignore the stabbing stuff. So the following has shown nothing: MRI, lowe lumbar X-RAY, derm exam which proved negative, my doctor exam which proved negative, lower extremity EMG which came up clean, blood work to include check on kidney function, topical steriod cream and other hail mary stuff which did not work. It is now time to move on to my consult with Dr. Hibner on 3 May. At this point I hope this can actually pin down I know in my mind what I have which is classic PNE. More to follow and will keep hanging in there...Jim