Rectal nerve dysfunction from GBS?

Hi everyone - I've been a member of the forum since a little after my initial onset of symptoms in February, but haven't posted as I've felt dumb complaining about my relatively mild, sensory form of GBS when so many here have suffered so severely from it.

My story: after a short illness in February, I woke up with little feeling in my feet and legs, up to around my waist, and my bladder not being especially responsive. A trip to the ER got me in a spinal MRI and it came back completely clean, as did every blood and urine test. Since I still had mobility, strength, and reflexes GBS was initially ruled out but there were no other theories besides "post-viral neurological thing". I went home and waited it out, and very slowly my condition improved - the numbness and fuzziness in the feet and legs slowly diminished - but other symptoms started cropping up.

Fast-forward to almost four months later: every test I've taken, which now includes EMGs and a spinal tap, show absolutely nothing wrong with me. doctors are accepting that I have had a sensory variant of GBS since it's the only thing that comes close to matching my experience. symptoms are down to three main things - heavy right thigh which comes and goes, a tingling in the left hand which comes and goes, and what I can only describe as cramping in the rectal and anal muscles.

When I sit, I'm perfectly fine. When I stand and walk, it's a coin toss as to whether I'll feel a mild tightness in my backside or if it will feel like the base of my tailbone is being clenched by a fist. I can walk and bike and carry on as normal, but the discomfort and distraction is making me nuts. If I am standing and bend my head down, I can feel a tightening/fuzziness along the path of the sciatic that I think is triggering this. My bowel movements are semi-regular - there are bouts of constipation where I can't go for a few days - but while going to the washroom feels good in alleviating the feeling of "fullness" that accompanies the cramping, the actual act of using those muscles seems to aggravate the phenomenon. About a month ago, it seemed like it was getting better and while it hasn't regressed to where it was in March, where standing and walking was an ordeal, it has gotten worse in the past two weeks and hasn't been improving.

I guess my question to the group is has anyone experienced anything similar? Is there any sort of medical or therapeutic practitioner I can seek out who can help alleviate the symptoms? Since there is clearly a physical aspect of it - the aforementioned bending of the neck and upper torso and the seizing up of the muscles in the buttocks - is there some kind of therapy that can help? Or drugs? I'm currently on gabapentin, about 300mg a day. Maybe I need more. I have no idea. I have had a variety of neurologists handling my case since it began but no one has really taken ownership of it; I'm trying to get an appointment with the one who handled the EMG - the last one I saw - to see if he can refer me on to someone. I had hoped that things would keep improving as they had since this all began - slowly but somewhat steadily - but feel like I've plateaued at a place that still adversely affects my quality of life.

So yeah - like everyone else here, super-frustrated that no one knows what's wrong with me. Would love to find some way of being proactive in my recovery instead of just waiting, even though I know that's ultimately the only thing I can do.

Don’t feel dumb any version / variant of GBS is something I do not wish on anyone. My case I was in the hospital for 4 days the first week of Sept 2014 and very similar to you started at the feet and moved up and arms and in and on top of that my face, eye and mouth were hit hard. Its been 9 month and I still have some issues.

At about 2 months out my lower back was just a knot all the time and the pain was almost unbearable. I never took any drugs. What worked for me was Acupuncture and adjustments from a Chiropractor and deep tissue massages. The hardest thing was to get the muscle to release. Sometimes it did not last long because the way the mind works but I was always a step forward.

All the doctors do is try to treat the symptoms if they can, most just give drugs and tell you to come back later, may be a EMG test so they could see if the nerve were growing back. For me I could see and feel results on the spot with the Acupuncture treatments, massages and Chiropractic adjustments.