Has anyone been diagnosed with P-Gad! Would love to hear from you if you have.
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Have your doctors ruled out other issues that can cause pgad? For me, it appears to be caused by nerve compression (chronic radiculopathy found at L5/S1) I have an upcoming MRI to figure out which issue I have with my spine and nerves so we can get the situation fixed. I am beginning to view pgad more as symptoms that something else is going on in my body, rather than an actual diagnosis. I know some would disagree, but, for me, this seems to be the case. Are you familiar with Dr. Irwin Goldstein’s work or have you heard any of the interviews by Dr. Robert J. Echenberg? There are some great materials that discuss the five regions which may cause the problem (end organ, pelvis/perineum, cauda equina, spinal cord, and possibly the brain) You can go to http://www.isswsh.org and click on the resources/videos to learn about this. Have you had an EMG/NCS or MRI? My understanding is that the EMG/NCS will not show small fiber neuropathy, but a punch biopsy could help with making the diagnosis.
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I’ve had EMG nvs Mris xrays you name it.
That’s why I’m looking into MR NEUROGRAPY.
But you have to have a doctors order and finding one right now seems like looking for the end of the rainbow
I thank you all so very much for the replies to my question I do appreciate this knowledge and understanding more than words can say! It’s a nice feeling knowing finally I’m not alone in this awful struggle. Thank you so much! Linda
What is an neuro-MRI?
I'm looking into revision surgery of my major spinal reconstruction in Nov., 2016 (7 hours, fusion T4 – pelvis).
I was left after that surgery with most of the deformity corrected (major kyphoscoliosis – getting to Quasinodo territory), but several unfortunate problems:
left foot toeing out (major gait abnormality) and "flat back" – abnormal lordosis which left me tilting forwards when I walk, increasingly so. (Surgeon denies either has anything to do with him even though the symptoms only appeared after I came to!)
I can't walk more than ~ 100 yards without support, and the pain which was at first mostly relieved is recently becoming intolerable. (Probably related to a freak home accident, "blunt force trauma". Fell on my laptop – sharp corner side up gouging deeply into my chest (who does such a nutty thing?). The first "10" pain score in my life including two unmedicated childbirths and that spinal surgery (which may patients describe "like as being like run over by a train.) "
Unfortunately, I can't have any more CT myelograms as my disks are all completely compressed – can't get even the smallest bore needle in, and MRIs seem to be limited by all the titanium from T4 to the pelvis.
Maybe this technique would provide needed information to diagnosis all that's going on, needed for a revision operation.
I first had PGAD symptoms a few years ago – I'm 70. I also felt that I had a UTI. A mercifully short medical journey brought me to a uro-gynecologist who said that I probably had a Tarlov cyst. She sent me for an MRI which showed two Tarlov cysts – one on my tailbone. This is presumably the source of my trouble. I take Lyrica although that's prescribed for another diagnosis. The uro-gynecologist gave me some vaginal suppositories that include valium and lidocaine. They help a little. I don't have this all the time, but it is bothersome when I do.
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