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Started by Maidhealthy on 11/20/2010 1:28am

Does anyone have a diagnosis of Arachnoiditis? I believe this is the condition I suffer from but cannot find a doctor who will listen to me. In fact, they continue to want to treat me for depression. My body twitches uncontrollably and I am in pain all the time. Every symptom I have is consistent with Arachnoiditis. I am just so frustrated with the fact that the doctors are blowing me off. They keep passing me off to the next "specialist" but the appointments are months in between. It took me 6 months to get into a Rhuemotologist just to have her tell me I don't have Rhuemotodoid Arthritis but I do have Osteo Arthritis but that she doesn't think that is the problem. However, she did recommend a medication that they use to treat Arachnoiditis.

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Yes. I have Arachnoiditis (along with many other spinal problems). I can tell you this is a very REAL disease. First off, hang in there and don't give up. Lord knows it's very frustrating finding a doctor to treat it. You need to find an Anethesiologist that's familiar with Arachnoiditis and get an IME (Independent Medical Exam) after you get a XRAY and a MRI done (so the anethesiologist can interpret the results of the MRI / XRAY). Get yourself the MRI and XRAY and then contact Dr. Aldrete http://www.arachnoiditis.com/aldrete.asp). He is an expert on Arachnoiditis. I don't know where you live but his office is located in Birmingham, AL. I had to travel 8 hours to see him but if you are certain you have this disease - it is worth the trip. You will have to call him to set up an appointment. After all this, if you don't already have one, find yourself a PCP that will refer you to a local Pain Managment Clinic. You are in for a life long struggle to manage the pain - good luck, don't give up and God Bless.