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Arachnoiditis: Trying to find a specialist

Spine Health | Last Active: Mar 31 2:11pm | Replies (325)

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@tennis123

Hi,

I am in my 20s and am concerned that I may have arachnoiditis. About 6 months ago, I started developing minor lower back pain with crawling sensations in the area of pain. It would flare up intermittently and my back pain would worsen slightly with each flare up. Now the pain is extremely bad. I am experiencing tingling/vibrating in my pelvis that worsens significantly any time I am sitting down. I also am having vibrating/twitches in both legs along with muscle spasms. I had a lumbar MRI w/o contrast which was read as normal. I don't have any medical history that would increase my likelihood of having the condition (no hx of back surgeries etc.). Do my symptoms sound like any of yours? I don't know what to do at this point.

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Replies to "Hi, I am in my 20s and am concerned that I may have arachnoiditis. About 6..."

Probably not. You might have ankloysing spondlyitis, which I have, in addition to a disk herniation. Both can cause these symptoms. It would have probably showed up on MRI if you have a herniation. But any kind of small injury to the ligaments or disk even if not visible on an MRI can result in inflammation that irritates the nerves and causes these symptoms. Most people probably don't notice or have as specific an awareness of you -- or are as articulate or specific about the flavors of the pain. So most doctors don't really differentiate between "tingling" and "numbness" or "vibrating" and "buzzing/crawling" etc. They just call it sciatica and pain. The thing is, the inflammation you're experiencing could eventually lead to arachnoiditis. So you want to take anti-inflammatories like a good NSAID (Advil crosses the blood brain barrier so that's good) and maybe a corticosteroid (but not injection, just oral) for short term to reduce the inflammation. There are also a lot of herbs and supplements found in studies that can inhibit scar tissue formation and arachnoiditis formation--which are basically the same thing. For inflammatory backpain like anklyosing spondlyitis, which might be something you could have if it persists long-term (more than a few months), you should see a rheumatologist, because 99% of other doctors won't consider it because it's rare (like 1 in 100 cases of back pain with guys, mostly young like you). The thing is, some doctors will argue that until there is erosion in the SI joints you don't have it (some will even say until your spine is fused), but you can still have it without damage visible on an MRI. There's a blood (I think genetic) test for it.