This is probably going to be a long one, so prepare yourselves! Grab a coffee, go to the bathroom, sit back and relax
My case is complicated by the fact I have MS. I have had MS for 8 years, my main problem being neuropathic pain experienced in my left arm, face and shoulder blade. These symptoms are explained by lesions in my cervical spine. However my MS has been relatively stable for about 7 years, which is why I am now 100% convinced that my issues are not MS related. So for this purpose, pretend I don't have it, I like to
For the last 2.5 years I have had nerve pain in my coccyx area that has got progressively worse. I have always thought it was related to MS. It started with a throbbing sensation in my perineum. That came and went for a while. It wasn't a bother. It was replaced with a slight throbbing sensation in my coccyx area. Gradually it became slightly painful, to now, where it is awful. Awful, awful. I am a patient of the pain clinic. I take 1000-1200mg carbemazepine and 2400mg gabapentin daily. The pain is ok during the day, in fact sometime it disappears completely for a couple of hours. From 4pm onwards, until 8am, it's just awful. I have had ketamine infusions (no change there). Gradually, over 2.5 years, I now get urine leakage, not heaps, but definitely a problem. I have not yet been faecally incontinent, but it's been close!!!! My sensation around my anus is definitely diminished, and as far as sex goes, I have basically about 10% sensation in my clitoral area. No desire whatsoever!! I have to push really hard in order to urinate, if I don't, the urine stream just stops. Every now and again, I get a pain down my right thigh. Not often. Coincidental perhaps. Previously, I used to be able to get the pain in my coccyx to completely disappear by laying on my side in the foetal position. Now, that position does make the pain better, but it will no longer disappear.
I have had a pelvic xray (NAD)
I have had a ultrasound of my coccyx area (NAD)
I have had a ultrasound guided cortisone and local anaesthetic injection (no effect)
Probably about 3 years ago, maybe longer, I fell from the bar stool, directly onto my hip on the tiles. Could this have been the beginning?? Not that it really matters, because I am at the end of my rope with chronic pain. I don't really care what caused it, I just want to make it better.
Now, I haven't been formally diagnosed with PN. But my mother has recently been diagnosed with it, and her father and grandfather both had issues with their lower back and spine. So I know that this issue I have is not MS, there is no MRI evidence to suggest anything is causing my coccyx pain.
You guys are so much more knowledgeable about PN, so what do you think?? I do have an appointment with my neuro on the 28th, where we will be getting further appointments with other specialists.
I have looked and looked and looked into this. I am a nurse so I do have a medical background (I am not some crackpot hypocondriac). Put it this way, nobody in their right mind would choose to take this much medication if they didn't have a reason to.
So thoughts?? Ideas?? What should I do next??
Liz
