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Arachnoiditis: Looking to talk with others

Spine Health | Last Active: 3 hours ago | Replies (404)

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@tennis123

Hi,

If anyone is still on this message board, I need advice please. I am in my 20s and started having lumbar and sacral back pain about 6 months ago. At first it was mild. In addition to the pain, I have had a strange crawling sensation in the same area too. The pain has waxed and waned since then but now is almost always there. Most of the time it feels like I have a tight band around my back, pelvis and low abdomen. About 2 months ago, I began having spasms and feeling like I needed to pee all the time. About 2 weeks ago, I started spasming really badly in all my pelvic muscles while still having the back pain and now am barely able to have a bowel movement because my muscles won't relax. I also have terrible vibrating/tingling in my sacral/pelvic area every time I sit down. I had an MRI of my entire spine that was normal about a month ago. I've also had numerous normal labs. Believe me, I've had almost everything checked. Acute phase reactants have been normal 3 times. I don't know what to do at this point. Does anything know what this could possibly be? Does it sound like arachnoiditis? I have no obvious known triggers like any spinal surgeries. I did have myself tested for HSV-2 and tested borderline positive for antibodies but have never had any obvious outbreaks that I've ever noticed.

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Replies to "Hi, If anyone is still on this message board, I need advice please. I am in..."

I’m so sorry to hear that you are going through this. You have many of the same symptoms that I have been struggling with for many years.

Did the lumbar/sacral part of your mri say anything about Tarlov Cysts? If not, perhaps you can ask your doctor to request a re-read of the MRI to assess for presence of them. Your symptoms sound very similar to those that people experience with this condition. The name Tarlov Cyst is somewhat of a misnomer as the actual condition is ballooning out of the nerve tissue within a nerve root, usually at the sacral level but sometimes at other levels of your spine.

Another idea is to ask your doctor about prudential nerve entrapment. This has similar symptoms to yours and to Tarlov Cysts.