Connect
Arachnoiditis: Trying to find a specialist
I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.
Like
Helpful
HugInterested in more discussions like this? Go to the Spine Health Support Group.
Connect
I'm in same boat. Use a wheelchair. Pain is horrendous. I have same disabilities you mentioned. Nobody can get any help! It's unbelievable how Dr's won't help. The DEA is making us all suffer that have legitimate pain and made to feel like criminals or addicts.
Oh, boy, because of opiods problem, government going to limit pain meds. We with chronic, serious pain will be punished because of others. Having AA ànd cannot get much pain med, I can't imagine how bad this will be for us with horrendous chronic pain!!!
What pain med does give us some relief? I'm in a wheelchair now, cannot walk because pain is so severe. What can relieve this pain?
im in desperate to find one in Texas.
did you ever find a Dr and or relief
I have Adhesive Arachnoiditis and have all symptoms of lupus. Taking pain medication over a long period of time seems to rob you of your happiness. I have found three wonderful female doctors that have started helping me with the chronic inflammation in my body. LDN (3 mg from Compound Pharmacy) works over time. Plaquenil 100 mg (Lupus medicine) in the morning and LDN at night. This has helped me more than any pain pill! My blood work has improved. Your hair will start to grow back. My legs don’t fell like lead pipes.
I had a doctor tell me if you don’t get the inflammation down you will never have any relief. I started not absorbing my iron or minerals due to inflammation in my gut. You may be making iron and have no saturation! My AA now has all symptoms of Lupis. I don’t believe it’s Lupus. I believe it from the AA going untreated. I was on pain medicine for years. That was my only treatment. If I am not absorbing my iron...how can I be absorbing my pain medicine? I had enough and now I am on the LDN at night and Plaquenial in am. I told my new doctor I don’t want anymore pain medicine! I want to get rid of my inflammation. My inflammation markers were off the chart. C reactive protein was a 36.7 is suppose to be lest than 1. ESR was 70 suppose to be 20. Pain medicine was not helping my numbers. They were climbing every year. I had enough and went to see a Rheumatologist. Now My numbers have cut in half. Don’t wait too long to get treatment. It can cause organ damage, stroke or hear attack. Inflammation is a serious thing. If you are not getting treated for your inflammation...ask your doctor.
-
Like -
Helpful -
Hug
2 Reactions@caklady and @ginpain- Welcome!
@ginpain Here is a link to the American Medical Association’s doctor finder https://apps.ama-assn.org/doctorfinder/home.jsp. You can enter your zip code and find a physician or specialist in your area. or Have you considered traveling to one of our Mayo locations?
@caklady, great information! Thank you for sharing your thoughts and experience. Does your doctor think that your numbers will come down even more? What has your treatment consisted of?
-
Like -
Helpful -
Hug
2 ReactionsThank you @jamienolson ! What does the mayo clinic do? Does someone know if the pain stimulator works. What are your experiences.
Thank you!
I feel this way too! This is ridiculous pain.