Patient left on pins and needles as docs disagree

Dear Dr Roach: I have weakness, numbness and the feeling of pins and needles in my hands, legs and feet. I have been diagnosed with both Sjogren’s syndrome and fibromyalgia. I was working full time as a library assistant when my legs and knees collapsed a few times. I went to a neurosurgeon, who sent me for scans of my lumbar region. It showed no neuropathy, but a severe spinal stenosis and spondylolisthesis. He recommended lumbar surgery. But since I was not having pain in my buttocks or legs, he ordered scans of my neck and upper back too. Again, no neuropathy, but he is now recommending anterior cervical discectomy and fusion. He thinks this cervical surgery needs to be done before the lumbar surgery.

My rheumatologist, whom I have been seeing for over 10 years, maintains that the negative neuropathy test results indicate that the numbness I suffer from is related to my autoimmune illnesses, but the surgeon says that it means the numbness and other symptoms are being caused by the spinal nerve impingement. 

Who do I believe, and what should I do now? I am 64 and had to resign from my job because the county would not extend my medical leave. — B.R.

Answer: There’s a lot going on, so let’s look at each issue separately.

Fibromyalgia, a systemic disease of unknown cause, most frequently brings on widespread pain and fatigue, but it also may cause cognitive problems (often referred to as “fibro fog”), psychiatric symptoms (depression and anxiety, in particular) and numbness and tingling, especially in the arms and legs. Although these symptoms certainly are real, the diagnostic studies may appear normal.

Sjogren’s syndrome, an autoimmune inflammatory disorder, also may cause pain, numbness and tingling through a wide variety of neuropathies. Depending on the particular person, these symptoms may or may not show up on electromyography studies (also called an EMG, a test of the nerves and muscles using electrodes).

Spinal stenosis is the compression of the spinal cord or a nerve root of the cord by the bones and other hard tissues in the spinal column. This almost always can be diagnosed by the EMG, and surgery is the only effective treatment when the degree of impingement is severe. Spondylolisthesis is a misalignment of one spinal bone on top of another one. This also can stretch and impinge on the spinal cord. Severe spondylolisthesis may require surgery, whereas mild disease may be monitored.

With that in mind, the apparently normal findings you report from the EMG make me think that your rheumatologist is right and that your symptoms are more due to the fibromyalgia or Sjogren’s syndrome. However, anytime a neurosurgeon says an operation is needed, I take it seriously.

I think you don’t have enough information to make the most informed decision, and I would recommend you consult a neurologist, who is in the best position to provide guidance on whether the current symptoms are more due to the spinal stenosis and spondylolisthesis that your neurosurgeon is concerned about, or due to the Sjogren’s syndrome and fibromyalgia that the rheumatologist thinks are the cause. 

 It is certainly possible that you have spinal stenosis and spondylolisthesis, but it can be very hard to guess how much of your symptoms are due to which condition. You don’t want to go through major surgery expecting improvement if improvement is unlikely. However, you don’t want to delay neurosurgery if it’s truly necessary. That’s why I’d recommend a neurology visit.