I (38F, smoker (6-8 a day), buprenorphine patch (15mg), buprenorphine sublingual (3-4 a day) and 300mg Gabapentin 3x a day) have been experiencing severe back pain (thoracic to lumbar) for over 2 years. Multiple X-rays and MRI’s can’t find cause (mild degenerative changes, slight disc bulges, etc).
Less than a year ago I started to develop severe neuropathic pain in both legs, front of thighs and back of calves mostly. My legs would feel like blocks of cement. I’ve been slowly increasing my dosage of Gabapentin, and it’s helped ease it somewhat, however for the past 3-4 weeks I’ve now had numb feet (bilaterally however it has happened to both feet), and I’ve been experiencing a painful numbness in my arms and hands. This is happening more frequently, and my hands in particular will feel reduced sensation for most of the day. I’ve also been experiencing worsening bladder dysfunction for the past few months, mostly struggling to release urine, and then having to feel like I’m needing to “squeeze” the urine out.
Since yesterday, I’ve been experiencing significant pain when trying to raise my arms above shoulder height.
When all my symptoms started, because of my symptoms predominantly being back pain, and I’d tested positive for HLA-B27 - every specialist I’ve seen is fixated on arthritis (predominantly Ankylosing Spondylitis). It seems like nobody is taking notice of the rest of my symptoms.
What do I do? I live in Australia, and our public hospitals have extensive waitlists. I’ve been waiting on a neuro appointment for over 18 months. I see a rheumatologist but she’s blinded by AS.
I did see a private neurosurgeon, they did a nerve conduction study and all was normal apart from a positive babinski sign on my right foot. MRI of cervical spine showed minor disc bulge, however nothing else of note.