low back pain and fasciculations

[norder]

I have  excruciating low back pain for 3 years mainly around L5 and across the back of my hip with referred pain around my abdomen and sometimes down my left leg. I’ve had MRIs abdominal scans and bone scans plus EMG 3 years ago. All that showed up was probable iliohypogastric or ilioinguinal nerve damage and narrowed disc space at L5/S1. From the start I have had intermittent fasciculations down the left lower abdomen. This is now constant and is causing bowel urgency with severe pain and fainting. My GP, pain consultant and a bowel specialist all think this is being caused by nerve compression.
My personal feeling is that despite the narrowed space at L5, I actually have nerve entrapment  in the osteo fibrous tunnel on the iliac crest involving the thoraco lumbar junction.
The fasciculations are causing me more distress than the pain, knowing that as soon as I wake, they are there and that within 2 or 3 minutes I will be fainting on the toilet from severe nerve pain. I have now started to have panic attacks when I wake up knowing what will happen.  Even if I lie down for 10 minutes, I feel the fasciculations as soon as I relax; like a rapid fluttering in my abdomen. If I lay a sheet of paper on it you can actually see them fluttering the paper. I’ve coped well for three years but I’ve now had enough and can’t cope.  What can be done to release this nerve, who should I see  and is there anything I can do or take to stop  the fasciculations?

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.      
     The symptoms and story that you describe is consistent with a nerve compression syndrome.  It is unclear to me how to put all of your symptoms together and there is much data that I do not have.  Compression of a nerve/nerve root can cause pain that shoots down the leg, and if severe may also cause weakness, atrophy and fasiculations in a focal distribution (that is supplied by the damaged nerve).  The additional symptoms that you relate (bowel incontinence and fainting) are harder to explain.  Loss of bowel and bladder control can be caused by compression of the cervical spinal cord, the area of the conus and/or the peripheral nerves S2-S4. I would not expect bowel/bladder problems with a L5/S1 compression, especially if it is a peripheral lesion (as you suspect).  Fainting on the toilet is a classic symptom and is much more often related heart problems/arrythmia rather that pain from an nerve compression (which would more likely occur with walking/standing).  I would suggest that you have a repeat MRI of the spine with contrast, you may need a CT myelogram if the area of the conus cannot not be properly evaluated (for tethered cord etc).  I would also suggest that you have a repeat EMG (to evaluate for the chronic changes that would be expected if this is a long standing radiculopathy [pinched nerve]).  There are multiple medications that can treat neuropathic pain such as neurontin, elavil, lyrica, cymbalta etc.  The best way to address your 'fasicualtions' is to get a firm diagnosis and address the underlying cause.
I hope this has been helpful.

[norder]

Many thanks for your reply. I saw a neuro surgeon yesterday who thinks I have a problem with the nerve root at T12 / L1 with compression of a branch of the nerve over the left iliac crest. The areas affected by the severe burning pain correspond to the correct dermatome for that nerve branch. However he could not account for the pulsing/twitching in my abdomen unless it was fasciculations from the damaged nerve (3 years now). He plans hopefully to try a nerve root block in the region of T12 followed by decompression surgery over the back of the iliac crest. This has many times been mistaken for sciatic joint problems (no leg pain) , trochanteric bursitis or facet joint problems at L5/S1. However, none of this accounts for the bowel problems. IBS is being investigated and a sigmoidocopy ordered for 2 weeks time. In view of the long standing nature of this terrible pain along with 20 years of Fibromyalgia, is it possible that a general neuropathy has developed, perhaps affecting the autonomic nervous system?
I am now absolutely at the end of my tether with all this unremitting pain. I have tried neurontin which caused such severe depression I was suicidal and it didn't work anyway. Oxycodone does help a lot of the time but I worry about the effect on my bowel. I am taking buscopan and peppermint oil for that but it's not helping. The bowel, low abdominal pain is not griping pain but more a burning pain like the neuropathic pain I get from my back.
After my experience with the neurontin I am loathe to try the newer versions. My MRI showed nothing that could be causing the problem; no cord compression and only mild disc compression at L5 but not enough to cause this. THe EMG I had done was down the left leg but the neurophysiologist said the likely affected nerves were too deep in the abdomen to be tested. The only time in 3 years that I have been totally pain free was for one week when I was put on prednisolone for suspected temporal arteritis but the resulting constant headache was too bad to stay on the steroid. NSAIDs do not help at all.