Dear ASKickers,
I've been lurking at this site for awhile. You all seem to be well informed about AS. For the past several years I've struggled with some symptoms that appear AS related, but others that I'm not certain. I was hoping you could provide some enlightened feedback.
A little background, much of which will probably sound familiar:
I was dx'd with AS when I was about 17, the time I began experiencing pain in my lower back and hips. This wasn't too surprising, since my father had AS to the point where his spine was completely fused. In my 20s and early 30s I began taking different NSAIDs to help take the edge off the pain.
About five years ago, in my mid-thirties (Gads, am I that old already?) I began experiencing intense pain radiating across my upper back, rib cage, and sternum that lasted many months. At times my neck hurt so bad I could hardly move it. It also began to hurt when I breathed. The pain was so bad NASAIDs were of little help, and I lost a lot of sleep.
Over the past year my pain level has increased considerably, this time in my peripheral joints, mostly in my legs. For awhile the pain radiated up and down my legs so badly I couldn't stand or walk for long periods without having to sit down. Persistent pain settled first in my knees, then in my ankles and feet (everywhere but my heel). I still have moderate hip and back pain (love hearing the "crunch" sound it makes).
For the past six months I've been taking Celebrex, which helps to a degree. A rhuemy recently put me on antibiotic therapy but the huge drop in pain only lasted about a week. I'm HLA-B27 negative, but X-Rays confirm fused SI joints. The rest of my spine looks good on film but doesn't always feel good. Within the past several months I began to experience pain in my left shoulder and - the most telltale sign - an awful stabbing pain in my right eye that came from my first bout with iritis. I took prednisone drops for over a month.
All of the above problems seem consistent with AS, except that for the past few years I've also experienced some not-so-AS-type symptoms: numbness, tingling and electric shock-type pain in my feet; mild numbness in my hands; and periodic involuntary limb movement. I've also experienced lightheadedness and have had a several bouts with vertigo. I've seen a neuro for these symptoms for over a year but so far she's established nothing other than I have peripheral neuropathy and restless leg syndrome. Recent blood work, CT scans, and an MRI were negative.
An orthopedic/physical medicine doc I saw suggested the AS could be "impinging" on my nerves, but I'm not so sure. I've never read or heard anything about this. As you might imagine, the uncertainty is extremely frustrating and emotionally draining. By the way, several days ago I started a LSD regimen, but it's too early to tell if it helps.
I'm curious to hear if any of you have experienced similar symptom histories, especially a combination of numbness, lightheadedness, or other neuro-type symptoms, and if the doc/rhuemy you see thinks they could be related to AS.
Thanks much for taking the time. You have created a wonderful community here, and I'm pleased to be a part of it.
Mike
One can never get any but a loose and ignorant notion of such things except by experience.
~ Mark Twain on the issue of pain
