Health Organization for Pudendal Education

Update, The Lyrica seems to be working ok for now but in my opinion not as good as the gabapentin. I am doing 450MGS a day fo the Lyrica, hopefully my body will adjust. I also have my MRI scheduled for June 18 in Phoenix to be read by Dr. Kalinkin while looking for PNE and other issues. My PT starts with Jocelyn at U of A on 16 June so I hope I can start progressing on this problem. The nerve blocks are scheduled in August for the genitofemoral and obrutator nerves. But the MRI might change things. Lets see how it goes and thanks for the help from everybody on this forum.

thanks
Jim

Jim, I'm sure the wait seems like forever when you are in pain. I hope all goes well with your upcoming treatments/appointments.

Violet

Well it is back to gabapentin and tramadol. The Lyrica was doing nothing for me.

Hi everybody, it seems my left thigh is going numb off and on now. Just curious if this a by product of obrutator genitofemoral nerve compresssion. Or something else?

Update, wow things are getting interesting now. My inner thigh chaffing is flaring up pretty bad right now but the gabapentin has reduced alot of the skin sensitivity issues. So I go see my 2nd opinion (neurologist) and he conducts various limb resistance tests and other motor skill and memory items. He sees my chafing and the increased groin sweat. Also with one of the lower limb resistant tests (where he told me to relax my legs) and I thought I was, the doctor says that they were stiff as hell. So he wants me to back to the dermotolgist for the chafing but the big news is that he also referred me to get a DATSCAN done through the University Medical Center to check for early signs of Parkinson's Disease due to my gait and limb stiffening issues. I am still pursuing the lower pelvic MRI/MRN in Phoenix to check for PNE and any other nerve compression and nerve blocks soemtime in August. So there is alot going on here. Also I start my PT next Saturday and my neurologist does not think my issues are PNE related but he says to do the tests done anyways. Give me your thoughts on this issue.

thanks
Jim

You should rule out everything so if the dr. thinks maybe parkinson's then have the DATSCAN done to make sure. All the neurologists that I have met were totally clueless about PNE so I am glad he did say you should have whatever needs to get done to rule out whether it is PNE or not done. Hopefully, there will be some answers once you get the DATSCAN and MRI of the pudendal nerve and pelvis done. Good luck with PT and they may have some input on what is going on with you. Listen to what everyone has to say and see how they match your symptoms. Do some reading on Parkinson's and see if you think that matches any of what is going on with you. Unfortunately, most of us on this forum figured out what was wrong with ourselves before any dr. did and so you have to be your own detective and advocate. Keep us posted on PT and all your tests. Prayers and a big hug sent your way.

Hi Jim,

I hope your tests for Parkinson's will be negative but at least your doctor is ruling out all possibilities which is good. I was tested for MS when I was going through the diagnostic process. Please let us know how things go for you and we will be hoping for the best.

Violet

Violet and NYT, thanks for the support. I also hope that the Parkinson's stuff is negative also. In reality I am glad I got a 2nd opinion so I can clear the slate of everything that could be a problem. Up next is back to the derm people on Monday. More to follow.

thanks
Jim

Jim,
I went back and read your other posts. Regarding medication, I take 100 mgs of Tramadol 3 times a day and it definitely took the edge off when I started using it 3 years ago. I have actually awakened some mornings and forgotten to take my first dose, until I really start burning and realize I missed taking it. So I know it still works. But I have had trouble sleeping since I started taking it. So my Dr. prescribed 5 mgs of Ambien. Then Dr. McDonald told me to get off the Ambien and start taking 3mgs of melatonin at bedtime and it actually worked. Now I only take an occasional Ambien. Dr. McDonald told me over time to increase the melatonin but I haven't needed to do that yet. Just a thought to pass on to you.
Lindsay

Lindsay, the combo of gabapentin and tramadol seems to really work for me. Tylenol PM does me good when I go to bed. I was using some Ambien and Soma but I ran out of both. Sleep isnt really an issue for me right now. The only thing that really is a problem at the moment are the groin issues and the chafing without chafing signs (go figure) here in the 100 degree heat..lol. But as we all do we adapt to get things done. Hope all goes well for you in Phoenix and hang in there.

Jim