Hi Junie~
You're not blind honey, I didn't have my signature on till a couple of weeks ago. I had it on for a while on OBT, but took it off. I put it back on here when someone on the PN board wanted to know whom of us posters had PN; that it would be nice to let people know that couldn't remember, so I put my updated signature back on.

My Arachnoiditis has been diagnosed numerous times, BUT it has been missed just as many. It originally was diagnosed when my hometown doctors sent my MRI films out to be read for a herniated disc.

I was sent to Twin Cities Spine Center. They diagnosed it there also. I was sent to The Mayo Clinic. Their Radiologists missed it. I asked my Physiatrist to please read the films personally, because she doubted the diagnosis--even though the prestigious Twin Cities Spine Center had given the diagnosis. She came back into the room and apologized for them missing it. Yes, I have Arachnoiditis.

After the first diagnosis I had been in contact with Dr. Sarah Andreae-Jones (Smith), a leading authority on Arachnoiditis. She gave me the URL to her website: http://www.theaword.org She was so kind to answer my questions and calm my fears.

You're right about most doctors not diagnosing Arachnoiditis. It is not real common. A lot of doctors have not seen Arachnoidits outside of their textbooks. Most Radiologists miss it because they, too, have not seen it outside their testbooks, and they are not looking for it.

There also is no cure for it, and I'm sure you know everything I'm saying here. All they can do is treat the pain.

Since I have PN also, and the symptoms mimic each other, they don't know which disease is causing which symptoms. After two years my Mayo Neuro finally admitted that she believes that I have Arach. She didn't until now--even with all of those diagnoses documented. It's always an uphill battle.

I've had Arach for 19 years, if I got it how they think I did. It is a strange story. I went to my rheumy for what is now diagnosed as Fibro. My neck was locked to the side, so he gave me two steroid injections directly into the back of my neck while I was sitting on the exam table. They figure he injected into my spinal cord and the steroid traveled down my spine and settled in my low back.(my condensed version of their complicated story)

My pain levels are manageable most days. It's not real good by any means. The only pain med that I'm on is Tramadol--yeah, like pi$$ing on a forest fire, but I'm also on Topamax, Mexilitine, Amitriptyline and WelbutrinXL and a couple of other meds not related. (Mayo is Narcotic-phobic.) I also have a prescription compounded ointment that gives relief. It was for my feet, but I found it also helps the branding iron someone has in my low back.

I hope this info helps. You're not alone Junie, and again, sorry you had to join the club.
Hugs,
Jan