Re: [QUAD-L] Pain and AD

[Greg]

I take Neurontin too, but for me, that only helps with the arm tingling and some arm pain. It does nothing for my real bad body pain. 2 years ago, I went into the ER spamming very bad, hard enough to be grunting. I as breathing hard, but felt like I was not getting enough air. Almost panic attacks. One day I noticed my right leg would not goes perfectly straight, it would if you pushed it, but once you let go my knee would pop up about 4 inches. My right thigh hurt so bad I was going crazy. It felt like it was being crushed by a vice. I would wakeup from nightmares of my leg being on fire. After a bloodclot test, catscan, and MRI, they found I had H.O. (sp? Hepeotopic Ossification) on my hip. A year before I slightly hurt my hip and the bruise on my hip calcified into bone. Grew like tree branches into my muscles. So I guess I was having AD but without the sweating. They got the H.O. to shrink, but the pain is still there. The MRI also showed a "Thing" on my butt, though under the skin. No sore every broke threw. I changed to a Roho, do more pressure releases, etc. After a year they did a ultrasound and found nothing, but they would not do another MRI. They said it could have been a sore, or some bruising around the bone after 20 years of sitting. They still don't know for sure what is causing the pain. They say neither one of those should cause that bad of pain. I think it's obviously one of those things. Greg       ----- Original Message ----- Gabe takes 2400mg of neurontin for pain. Recently I increased oral baclofen and pain is reduced significantly. However the AD still appears everyday. We have seen Ad appear over anything. Wrinkled sheets, underware too tight, you name it. I think you’re right we need to explore the kidney stones and gall stone.   Thanks, Lana Gabe’s mom   From: Greg [mailto:[EMAIL PROTECTED] Sent: Thursday, August 18, 2005 1:19 PM To: Lana Baugh Subject: Re: [QUAD-L] Pain and AD   I'm no expert, but in my 23 years of being a quad, doctors have often said that one thing or another should not cause AD or that much pain. BUT they were wrong. I would guess kidney and gall stones would hurt even if small. My aide had to go to the ER from stomach pain and it was gall stones. I've had AD from small things like my shoes (very loose shoes, but my feet swell), or just my Superpubic cath not clogged but just needing to be moved around. Maybe it gets poking my inner bladder... who knows. Is he on pain meds other than Baclofen? I have to take 40mg of Oxycontin for my pain. I tried all those spasm pills, none worked for me. Oxycontin stopped my spasms completely and helps the pain a lot. Greg     ----- Original Message ----- From: Lana Baugh To: [EMAIL PROTECTED] Sent: Tuesday, August 16, 2005 6:59 PM Subject: [QUAD-L] Pain and AD   I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain.  It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down.  Now he has serious pain. We have been to all the doc’s. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says it’s possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts it’s the cause.   So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him.  He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer.   So the question is . could the pain that is going on now be central cord pain and the AD be a response to the central cord pain.   I’ve made an apt for him to see his rehab doc. Until then I’m going to give him oral baclofen everyday as an experiment.   What do you guys think? I’m asking you guys because Gabe can’t tell me everything that’s going on.  When it comes to this problem he can just tell me about the pain.   Help!   Gabe’s mom