From Claudia

Claudia in Florida sent in notes for readers. You can email Claudia at cklaurence@gmail.com

Claudia says:

"I have been looking for a physician who is actually familiar with arachnoiditis and treats the disease, who would discuss it with me.
I had an MRI early in 2009 because of horrific pain in my back and leg, and the radiologist gave a written diagnosis of Arachnoiditis. Three other physicians (all orthopedic surgeons - all with M.D. degrees) spoke with me about it.
The first did not think it was important (I believe he thought I was just scamming him for drugs) and referred me to a spine specialist.
The "specialist" showed me the film and pointed out the arachnoiditis, and then, because he believed the pain was from a ruptured disc, referred me to his associate for an epidural. I vehemently protested that this pain was nothing like disc pain, however, he and his associate reminded me that they "were the physicians," and insisted that the epidural would help the pain. It did not, of course, and actually exacerbated it.
The only physician I have seen since is my pain doctor. He is kind, caring and understanding (and treats several arachnoiditis patients), and in my once-a-month visits, adjusts my medication to try to keep a little ahead of the excruciating pain. There is no doctor locally that treats arachnoiditis.
My pain has increased over the past couple of years. Often, I can't get out of bed in the morning until my medication begins working. I have the whole array of symptoms, from "shocks," to ice water running up and down my leg and back. My joints ache constantly and my hands grow more and more crippled. Some days and nights I sweat profusely for hours--drenching my hair and body, clothes and bedsheets. A burning tightness in my hip, butt and leg often makes walking difficult. Some days I don't even want to get out of bed, except for the fact that I wake up in pain FROM laying on it!
I asked my best friend, who is a family physician, why there are no doctors who treat this disease. She advised me that doctors do not want to be associated with "hopeless" diseases. She was just being honest with me, not cruel. I have read articles on the internet wherein physicians stated that one is better off with a diagnosis of cancer than with arachnoiditis. Their reasoning? At least with cancer you have a chance of getting better--or dying, and either way, you would be out of pain. Arachnoiditis is a lifetime sentence. That is cruel...but true, as well."