WHERE DI I GO FOR TESTING

[deedeecmt]

IVE HAD THIS HORIFIC PAIN FOR 16 YRS..FOR THE FIRST FIVE I WAS DX'D WITH IC AND HAD MY BLADDER REMOVED, ALL THE SAME LONG LINES OF MEDS AND TREATMENTS AS EVERYONE ELSE HERE. I KNOW FROM YRS OF RESEARCH I THINK I HAVE PNE R SOMETHING LIKE IT. I HAVE BEEN GOING TO MY FAMILY DR. FOR LAST 10 YRS FOR MY PAIN MEDS AND OTHER MEDS. IVE HAD SEVERAL SPINAL BLOCKS NOT SURE WHAT..AT A PAIN CLINIC. I ALSO HAVE A SPINAL NERVE STIMULATOR BUT I DO NOT USE IT DUE TO AN ACCIDENT OF TURNING IT TOO HIGH AND COUOD NOT MOVE TO LOWER IT.THANK GOD I WAS NOT ALONE..BY THE WAY A TIP FOR ANYONE THINKING OG THIS..INS PAID FOR IT TO B PUT IN BUT NOT TAKEN OUT!! WHAT I WANT IS HELP GOING TO RIGHT KIND OF DR. TO GET TESTED AND A PROPER DX..WHAT DO I ASK THE OFFICE WHEN I CALL..MY INS WILL NOT COVER SOME MEDS ID LIKE TO TRY..LYRICA, CYMBALTA..HAS ANYONE GOTTEN HELP FROM THEM. AFTER MY ROLLERCOSTER HELL OF THE NARCOTIC MEDS WHICH AT A TIME I WAS TAKING 10 DIF MEDS .BUT AFTER GOING INTO HOSP TO WITHDRAW FROM OXYS AND ZANAX PLUS MORPHINE ECT..I DID FINE FOR 6 YRS ON NEURONTIN AND TRAMADOL, AND ELEVIL..BUT..NOT AS GOOD NOW..VAGINAL AND RECTOM PAIN 24/7.AND A SENCE OF VIBRATION,SOUNDS DUMB BUT TRUE.IT DOESNT GO DOWN MY THIGHS.IT ALSO HURTS IN LOWER ABD.I HAVE ALOT OF SCAR TISSUE THERE .ANY HELP WILL DO..I NEED TO B DIAGNOISED..IVE BEEN ON SSI FOR 10 YRS.DO I CALL ANY NURO OR CERTIAN ONES? THANKS FOR ANY HELP..DEEDEE

[Karyn]

Hi Dee Dee,
My goodness - what a rough time you've had! HUGS!!!!!! Welcome to HOPE and there's lots of information about where to go for "PN aware doctors" located on the home page. I don't know where you live and you may have to travel to get properly treated.
Please check out our List of Doctors and let me know if you need more help. Hang in there, hon. You're not alone!
Warm regards,
Karyn

[Violet M]

DeeDee, it might be a good idea to go to one of the PT's listed on our website for a possible diagnosis. A PT diagnosed me. Then if it looks like you might have PN -- you could travel to one of the PN docs.

You could also look into getting the 3T MRI from Dr. Potter in NYC. While it's not a 100% guarantee that she will find what the problem is, she has been correct for a bunch of people on the forum. I'm not sure how that would work though if you still have the neurostimulator in. You will have to ask her about that.

[wendy7]

Hi Dee Dee,

I am sorry to hear about your pain. I am on Cymbalta, Neurontin and Tegretol, which seem to work pretty well for me. It sounds like you were doing well for a long time on just Neurontin and Tramadol, but then it did not help as much as before. That sometimes happens. I would definitely try and find a good PT to address some of the issues that you are having and then also, after your doctor is finished in weaning you off of the naracotics, it might be worth trying something like Lyrica, to see if you can get the same effects that you had when you were only taking the Neurontin.

Take care,
Wendy