[vlboyer]

Hi, I'm new to this, but I've been experiencing back and leg problems that lead me to believe I may have Arachnoiditis. I've never heard of this disease before, but after several tests - MRI, EMG, CT Scan - the source of my problems remains a mystery. So, I went onto WebMD (mistake?), entered my symptoms, and came upon this disease. From what the tests have revealed, I don't have Scatica or whatever, so this seems to be the only possibility. Any suggestions? What causes this? Are there any meds known to contribute to it? Any help would be most appreciated. Thanks!

[tamiloo]

vlboyer...I wanted to say welcome to Neuro Talk. So sorry to hear about your troubles. Have you talked to your doc about what you think it might be?

Hope things will get better for you soon!

[Bannet]

Hi vlboyer and welcome to neurotalk.

Sorry I can't help you with Arachnoiditis. I'm not real familiar with it.

You have quite a few questions. Have you talked to your doctor? I hope you get your answers soon.

[Kathi49]

Hi Vl,

I wouldn't THINK it is arachnoiditis since it is usually detected on an MRI. But I wanted to ask...what are your symptoms and what did the results of the tests actually say? The only thing I can add other than to speak to the doc again is that I have a friend with Arachnoiditis and is severely disabled with it. Then again, my husband's PM has it and is still working. So, I wouldn't worry too much yet...just talk with the doc some more. Oops, one more thing. I do have cervical and lumbar issues but at one time the pain in my leg was pretty bad. Come to find out, at that time, it was the Piriformis muscle compressing the sciatic nerve. It was decompressed with deep heat ultrasound and massage and the pain down my leg was gone. Also, google Spine Universe and read up on Arachnoiditis; may be helpful.

[mrsD]

I did not go to WebMd...but I did find this link for you to look at.
http://www.arachnoiditis.com/disease.asp

Notice that this disorder is basically the result of previous medical interventions (these are called iatrogenic). The organic diseases that may cause it are pretty serious.

If you have not had injections, or drugs that cause bleeding, or any of the serious illnesses, your chances for this are small.

Many people have things that don't show up on tests.
One is that if one leg is shorter than the other, it throws off your whole gait, and leads to strains.

I'd get a referral to a good chiropractor and see if anything can be done. Also Physical therapy is good. I had PT for a serious tendon injury which took care of most of the pain...I still have some and stiffness, but it is not like it was.

[Colin Street]

Originally Posted by vlboyer

Hi, I'm new to this, but I've been experiencing back and leg problems that lead me to believe I may have Arachnoiditis...

I have just joined. I have a condition that produces similar symptoms to arachnoiditis: poor control over legs & reduced mobility, intense neuropathic pain in my legs and, before an operation two years ago, bowel problems.

There does seem to be a weight of opinion behind a cause of arachnoiditis being medical interventions. I had three interventions in a relatively short period in the 1980s: an epidural injection (to relieve pain of a kidney stone, you don't have to be female!); a myelogram, to investigate back problems; and a steroid injection to relieve said problems (it didn't). A lot of questions have been raised about myelograms.

In the 1990s I developed neuropathic pain (think widespread jangling, stinging, burning) in legs and was diagnosed, after a nerve conductivity test, as having "root nerve damage".

The operation, for spinal decompression, was carried out in 2006 when the condition suddenly took a turn for the worse, but the op relieved only the bowel problems. Since then I have tried most if not all the drugs said to be effective for neuropathic pain, to no avail. The only diagnosis I have managed to wring out of the profession is myelomalacia - softening of the spinal cord. Some sources say that myelomalacia is associated with arachnoiditis (try using the two as a search term).

Stopping treatment has had a positive psychological effect on me - I no longer look for what others can do to help - they admit they have no further treatments - but look for answers in myself, my attitudes and behaviour.

Hope this helps a little.

[mrsD]

have you investigated and tried B12 therapy?

Have you been tested and if so are you below 500?

I'd suggest to you that you look into this...since low B12 levels occur in the spinal cord in some degenerative diseases.

It is inexpensive, and easy to do. Those of us on this board, use the activated form of B12 called methylcobalamin.
We buy it for 9 cents a day from iherb.com

There is an RX vitamin made for neuropathy...containing methyl B12 along with activated folate and B6. It is called Metanx, and made specifically for neuropathies:
http://www.metanx.com/
This mixture can be done OTC but metafolin is not easy to find these days. If your doctor approves, you could get this and perhaps your insurance would cover it---but not all do.

Here is a website to read:
http://roseannster.googlepages.com/home
rose had mystery neuro degeneration and B12 was ignored and so she has researched this medically for others who are
having problems not helped by doctors.

Good luck!