I don't have an update yet, but I'm getting the epidural steroid shot tomorrow, and I have a question. Over the past couple of months or so, while I sleep, I get woken up by a burning sort of numbness that runs down the outside of my right thigh. It's hard for me to explain exactly how it feels, but the best I can do is that it is very numb to the touch, but it also has an uncomfortable burning to it. This burning happens when I sleep with my right leg extended out, and when I wake up from the discomfort, I move my right leg around and keep it bent, and after 10-15 minutes, it goes away. I was wondering if anyone had any explanation for this. I assume that a nerve is being compressed, but I don't know if it's something to worry about.

Also, there's something I haven't really paid attention to, but it dawned on me that I should explore it -- my upper spine/neck region is also painful and has been for over a year. Whenever I bend my neck downwards (chin to my chest), I get a pain in my neck, upper spine, and mid-spine. I can also feel pain in my lower back on the right side (where most of my major pain is). It is at its worst when I wake up in the morning, to the point where I can barely move my head. I was wondering if you guys thought I should explore getting an MRI on that, or if you think it's just the symptoms of DDD.

Finally, I've been reading up on ankylosing spondylitis, and a lot of it sounds like what I have. There's the obvious lower back pain, but I've also had joint pain in my knees, shoulders, and hip, and unexplainable breastbone and rib pain for years (the symptoms of costochondritis). I also have pain that basically runs down both sides of my body, like where the muscle attaches to the bone and general fatigue. None of this is particularly debilitating (except the lower back pain), and I guess I haven't thought much about it because I've been dealing with it for so long that being in pain is my new normal. I'm going to bring this up with my neurosurgeon on the 17th, but I was wondering if you guys know anything about this disease.

I know I'm asking a ton of questions, so if anyone can help with any of this, I totally appreciate it. I don't want to start sounding sappy, but you guys have been so awesome to me, and you've really helped me get through this whole process.

Hope the shot gives you some relief. You know we are not professionals, but you did say alot of symptoms that are considered Neurological in nature. Therefor I would be inclined to get an MRI of the spine, to make sure you do not have nerve inpingment of the cord. The neck pain you described can be from a number of things. May I ask what you do for a living? feel better soon, ginnie

I think I'll ask my neurologist to order up an MRI on my neck and upper spine, just to be safe. As for my job, I've been a student until recently, and I've been running an online store, so there's been a minimal amount of physical labor. The most strenuous thing I've done is run Cross-Country in high school, but that was five years ago. I did get stress fractures in both of my legs from that, but that should be unrelated to my back problems.

Small update. I had my shot today. I was ecstatic to feel almost total relief from the anesthesia. Unfortunately, it made me notice my knee and hip pain more. The anesthesia has already worn off, and I'm feeling about the same amount of pain I always have. I'll monitor the situation closely over the next week and see what happens.

I talked to my primary care doctor today for the first time since I got my MRI results. She was unsurprisingly much more open to giving me pain medication; she even apologized for it taking so long for me to get some. I understand that she didn't want to give a 22 year old narcotics without proof of pain. I could have been any other drug junkie. After telling her all of my symptoms, she seemed to agree that ankylosing spondylitis could be a very real diagnosis. She ordered blood tests to test for the blood marker that is found in 90%+ of AS patients. I know this is a back forum, but I've been having pretty bad knee pain and hip/groin pain for at least a year, so I'm getting X-Rays and MRI's done on those areas soon. Also, I'm getting my cervical spine imaged, too. I'm not expecting more than some basic DDD being there, but it does hurt quite a bit, and problems with the spinal cord up there scares me.

I finally feel like I'm getting somewhere with all of this. I don't want to make this my personal blog, so I'll try not to clog up the board with unnecessary posts. I'll still be checking daily for any advice you guys may have, though (I still really, really need it!). You guys are awesome!

Whoa....what a minute! You had all of those degenerative changes in your spine with severe central stenosis....at the age of 22? Something is missing or afoul...??

You are about the right age for AS; I am assuming you had a positive HLAB27 on your labs, when you speak of a marker? Usually a panel is run along with that...including ANA, CRP, sed rate and rheum factor (sometimes CBC if RA is suspect as anemia is associated with it). Did you have those too? Sounds like you'll soon be visiting (or should be) your friendly rheumatologist!

Yep, I'm only 22. And the pain started when I was barely 21. Like you said, all of my symptoms fit AS -- I'm the right age and gender, I have the obvious back pain, I have symptoms of costochondritis, I'm having joint and tendon issues with my knees, hip, feet, and hands, and more. I've done a ton of research on AS and I actually suggested to my primary care doctor that we should explore AS today and she agreed. I just had blood drawn today to test for the HLAB27 factor. I'm assuming they will check the sedimentation rate, but I didn't ask. I had a blood test done to rule out RA a while ago, and I was at least cleared of having the RA factors.

I thought I would update you guys on my situation. I had the discectomy surgery about three weeks ago to shave down that disc. The neurosurgeon said it was one of the worst cases he's ever seen, and he was surprised I could even walk. He told me there was only a 60% chance the surgery would alleviate the pain in my back, and it seems like I'm in the other 40% right now. I'm still hopeful that after six weeks (the recommended recovery time), the pain will be gone, but as of right now, I'm still feeling about the same amount of pain I was before the surgery.

I've got a follow-up appointment in a few weeks, so we'll figure out what's next for me. I was in immense pain for about a week after the surgery, so if he suggests a lumbar fusion, I'll probably decline it. I don't want to go through that again. Of course, there are other negatives to having a lumbar fusion at my age as well.