Arachnoiditis Sufferers User Group
Does it sound like I have adhesive arachnoiditis?
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Arachnoiditis is a rare chronic neuropathic disease that has no cure. If you are looking for others who have this disease, you have found the right place. Take a moment to tell your story. Together we can help each other in our journey with Arachnoiditis.

Founded by mummy3too on July 30, 2010
28 members
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Does it sound like I have adhesive arachnoiditis?

Idk if I have adhesive arachnoiditis but I have a good idea that I do.  I have systemic lupus and have 9 nerve entrapments dx all at once and progressing.  I have dx by my neurologist from EMG with carpal both hands, tarpal both feet, ulnar both arms, radial on the right, pereonal on the left.  I also have trigeminal neuralgia both sides, geniculate neuralgia on the right and occipital neuralgia both sides.

Some of most incredible cooincidences that MIRROR my condition include having symptoms of cranial neuropathies, burning mouth syndrome, solar urticaria, neurogenic bladder, burning feet pn and the misdiagnosis when having adhesive arachnoiditis of cervical spondlyosis (check), ulnar and carpal tunnel (check), cervical spondylosis (check) and EMG (check again)

In addition and I am not sure if this is relevant is that I have some cns involvement, my recent EEG after a possible TIA showed slowing of brainwaves on the left side.  My ANA's while high on occasional tests, is constantly kicked back from the lab with a note that says "unable to obtain results due to immune complexes".  My rheumatologists always raise an eyebrow during this but the only info I get from the lab is that my blood looks like little pacmen eating each other up..???  Idk if that is important, lol.

I've often suspected some kind of inflammation of blood vessels since my cranial neuropathies are intermittent.  

I also recently started having dental problems, sores on and under my tongue, some lymph gland inflammation and my teeth are starting to chip.

My neurologist says he suspects seizures and is studying my recent MRI's.  

I am scheduled in Feb for an anterior fusion of my cervical spine and being scheduled for carpal and tarpal tunnel.

I recently had a bout of sacroillitis (it was awful) and have occasional hip and near tailbone pain.  I have osteoarthritis and dgenerative disc disease with some lordosis of the cervical spine as well.

My grandmother also had my exact symptoms at the same time of life as I do.  Lupus, inflammatory arthritis, bouts of sacroilllitis, TIA's, extensive nerve problems, bells palsy, burning mouth syndrome, trigeminal neuralgia, lordosis (hers was severe) and she had ankylosing spondylitis.  I suspect I am or might be at the beginning stages of this as well but I have not had an MRI to confirm.  I had an xray of the area and all they found was a slipped vertebrae at L4 but I can tell the difference in pain, are you kidding?, lol and THAT is not the same as the bout of sacroillitis I experienced.  I couldn't move without pain, had to have help getting up and down, couldn't be touched in my hip and right side of my tailbone area, couldn't find a position to sleep in, etc.  Not from the slipped disc.  It was an incidental finding in my strong opinion.

So that's it.  I've been in pain management for many many years for oa, peripheral neuropathy (the entrapments are new but I had (not anymore!) pn for about 14 years.  I get radiofrequency ablations in my neck and cortisone shots in my feet for really bad plantar fasciitis.

What do YOU think?  What tests should I ask my neurologist for?  Would a nerve/muscle biopsy answer any questions?

My plan right now is to keep treating the symptoms.  I'm on lots of meds including pain meds and anti-seizure meds.

I'm used to living with pain.  My grandmother in spite of having these problems lived to be 94.  Her mother lived to be 105.  I'm happily married 23 years am age 51 and have two children, one grown and a 12 yr old boy.  I live in Phoenix, AZ.  Truth is I'm not worried about being dx'd for this condition.  I understand it's alot like my lupus, you don't wait till things get worse and treat the symptoms and conditions they cause as they come and move on.  I work from home now and am a graphic designer.  I applied for SSDI (social security) but was denied several times in spite of them recognizing I have a dozen chronic illnesses and I have a lawyer now and have been waiting the last year for a hearing date to be seen in front of an administrative judge.

That's about it in a nutshell.  Thanks for being here and I hope you get this email.  I understand this condition is rare.  If there something I can do to help someone I would gladly do it.

Sincerely, Julie Koehler
1 Comment
Wow, I think I'll stop complaining about my own multiple chronic problems after reading your list! I don't think I can answer your questions at all, but I hated to see your post go completely unanswered. This group really doesn't seem very active, so I haven't even checked it in a while. I got my dx of arachnoiditis back in 1986, but I don't know anything about tests used to diagnose it because mine was dx'd visually during my fourth lumbar spinal surgery and my doctors don't pay any attention to that aspect of my physical problems other than to deal with the pain. I'm a lot more active in the Hepatitis C and Cirrhosis communities here because my second spinal surgery involved a transfusion that gave me that virus and it led to cirrhosis. I've also had some autoimmune problems including some kind of autoimmune arthritis with multiple painful joints and an elevated ANA but not much else, and I've also been through carpal tunnel surgery on both wrists (with good results). Keep on being strong (you are seriously tough)!

As I said, I don't think I can help other than to let you know you aren't alone. I also can encourage you in getting the carpal tunnel surgery. It's the pits to have it but it sure did fix one source of pain quite well, and I'd choose it again if I had it to do over.
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