For me the pain has all been localized to the pelvic areas and right foot/toes. The strangest part of all this is how new symptoms would show up over time. First the genital pain then a coulle weeks later added big toe pain then bladder, inguinal etc. It never showed up all at once.
Then when the pain was more advanced it would move around to different parts of my foot. At first Laying on my sides would somewhat alleviate the symptoms but then later laying on my side would do nothing but laying on my back would help. Then eventually laying on my back would cause my bladder and genital symptoms to elavate to a certain extent.
The fact that so much was intermittent and moving around made it difficult to pin down and I could see the confusion in every single doctor's faces as I explained all of this. Honestlu not one single neurosurgeon or neurologist touched my body to try to reproduce or investigate my symptoms. The most they did was a reflex test. The only persons who actually tried to touch me was tge urologist and pelvic specialist. No matter what they did in my pelvic region they could not reproduce any of the pain.
Most all of my doctor's appointments has been about ruling out what I do not have, cauda equina, ddd in lumbar, pudendal neuralgia etc. The neurologist came close with his neck idea but like you said, he had no idea what to do with the results and the neurosurgeons would not commit to the idea that cervical issues could cause these problems. All everyone kept saying is how strange, rare and mystifying all this is. In my field of work, aerospace technology, we never took any information for granted and we never stop until we find the answer…. with so many doctors I've learned that not knowing or caring to find out is acceptable to them… I used to see these folks as heroes who know everything… then all this occured. I know there are compassionate, knowledgeable good doctors out there but I cannkt seem to find them. I have wept so much throughout all this. Not getting help has caused me so much pain.
Sorry to unload on you… as you know, this has been an ordeal of enormous proportions with steel walls everywhere.
My pain management doctor is amazing and it was his idea to look into Mayo clinic. He was a bit shocked that the neurosurgeon at MUSC, the best learning and teaching hospital in SC, would not really help me. I even asked the neurosurgeon for a referral to a MUSC neurologist and his reply was that I would just be disappointed with anyone he sent me to. I was floored by his unwillingness to help me find an answer. As I researched Mayo I foubd these forums.
Mayo Atlanta is about a 4 hour drive from me so it's not too bad but I've now become conditioned to be let down by any medical professional. I still have hope but it's more a flicker of hope than a flame. All tge ER doctors were astounded the morphine did nothing. It got to the point I just refused morphine because the only thing it did was make it more difficult to urinate which is horrible when your bladder is screaming at you every 30 minutes. A lot of the medical professionals I have dealt with have preconceived notions and if you dont respond how they think you should they give up and pass you off.
Right now the symptoms are very mild but I am terrified it may come back again. I keep hoping it was somehow the injection that caused this and it will gradually resolve but I dunno… I may be putting my hope into something that may not be possible.
Again, thank you for your very detailed reply. I am so happy to hear you found your answer and you are better… I would not wish these symptoms on anyone. I am truly happy you found hope and strength to keep pushing.