How to know when you have arachnoiditis
 

Long story short, ACDF C5 C6 C7 - L5 S1 Lami - Discectomy ->L5S1 Fusion in 2002. Chronic pain since the laminectomy (over 20 years) 18 plus years with a pain management team (All pain management procedures done multiple times - caudal adhesional lysis - RF Rhizotomy - medical blocks - ESIs - trial spinal cord stim) Labeled as Failed Back Syndrome


Neurology now involved - positive bilateral radicular finding on lumbar and cervical. I am in constant pain, burning , cramps in calves, tinnitus, dry eyes and mouth. Weak legs (knees buckle) that affect my gait, feet numb and burning, electrical shocks at times. Neuro is thinking its Small Fiber Sensory Polyneuropathy - Blood tests come back neg for the cause. Ordered Brain, Thoracic and Lumbar MRI's w / wo contrast.

I am wondering if I have arachnoiditis. I can easily paint myself into the symptoms for it just as easy as I can for the small fiber neuropathy. I don't want to self diagnose, I am just trying to get clarity or an answer to what I have been suffering . I have been to soo many doctors and received a variety of diagnosis. Bit overwhelmed and trying to "label" what I have so I can move to the next step in fight it.


I am reading thru other posts on the forum and look forward to meeting others on this journey.