The Director of the FDA comments
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The Director of the FDA comments
I had the injections and the side that is severe was very painful. I had that severe pressure like pain down my butt into my legs.
When I finally went to a rheumatologist and got the inflammation down. That has helped me the most. I have severe facet arthrosis and the doctor recommended a fusion. The Neurosurgeon will not do fusion on people with Ahesvie Arachnoiditis. I took strong pain medication for years. It took the edge off and I wasn’t myself.
My concern for taking Opiods for so long concerned me. I was worried about the effects it was having on my brain. I have a doctor friend who told me that I need to get my inflammation down. I made an appointment with a rheumatologist. They specialize in autoimmune and inflamed joints. I no longer take the strong pain medication. I stopped taking them after the inflammation went down. I can just try to give others the same advice my doctor friend gave me. Everyone is different and should always go by their doctors orders.
I would have never thought of going to a rheumatologist. I will tell you the rheumatologist asked me what took me so long to come and see her. When she looked at my blood work for the last few years. My inflammation markers had been climbing. They are now down for the first time in years.
I don't know where to start. It has done many things for me. I got diagnosed with AA in 2010. I was given Opiods and over time I started having other problems. I couldn't even take a shower without sitting down. My heart would race and my hair fell out and came back looking like lupus hair. Test for Lupus and RA were negative. I didn't have any eye lashes. I was put on Thyroid medication. My inflammation markers were very high and kept climbing. Then overtime I was diagnosed with leaky gut, anemia and Raynards syndrome. When I got diagnosed with low thyroid my iron was fine. These things happen over time.
The treatment from the Rheumatologist has stopped the progression of the autoimmune symptoms. It had attacked my facets in my lower back and I couldn't even go to the grocery store. The pressure going down my lower back was unbearable. I can just say that I wished I would have went to the Rheumatologist along time ago. I have so many broken blood vessels on my legs and purple toes. I am posting this because I hope that someone can learn from my experience and go get help for their inflammation. I no longer take the strong pain medication. I told my neurologist…don't need to take them anymore!
My Erythrocyte Sedimentation Rate was 56 mm/hr and my he-CPR was a 36.0 mg/L. The last he-CPR test I had was 8.0mg/L. It hadn't been below a 22.0 mg/L in 6 years. I hope this will help someone else not wait so long to get help.
I have AA and a rheumatologist helped me. I have a doctor friend that has Arachnoiditis tell me that if I don’t get my inflammation under control I will never get relief. I went to a rheumatologist. My numbers were so bad I was put on steroids for two weeks. I was given Plauqenil and calcium channel blockers. My numbers went down for the first time in years. If you don’t get the inflammation down it will cause you a lot more problems. I wish someone would have told me this years ago. This is what helped me the most.
Fri, Jan 11 2:49pm · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System
I have Ahesive Arachnoiditis and I wished I had known that I needed a rheumatologist. Things started to get worse over time. My thyroid started not working properly. I then developed Amemia from low saturation. I was so tired and my heart was always racing. My inflammation markers started climbing and climbing. This went on for years. My C- reactive protein test that my doctor first took was a 22 mg/L it should be less than 1mg/L. When I finally went to a rheumatologist it was a 32Mg/L. My ESR 56. When I went to the rheumatologist she asked what took me so long to come? They have medicine to stop the progression of an autoimmune diease. I had developed Raynards syndrome. She saw that right away. My toes were purple and swollen. This all comes from chronic inflammation. I was put on calcium channel blocker’s and lupus medication . My C-reative protein went down to 8mg/L in 3 weeks. I first got tested in 2015 and never been below a 22mg/L. I couldn’t shower without sitting down after I got out. I was so fatigued . I was not as tired. Don’t get me wrong I have days. It’s just not everyday.
My hair started growing back in. It was thinning and felt like straw.
My neurologist was giving me narcotics and I stopped taking the strong stuff on my own. When I went to rheumatologist first thing I said was I don’t want any pain medication. I got her attention then. I told her I want to get my inflammation under control. Inflammation was destroying my body.
I still have issues with my iron, Low iron, high Ferritin and low saturation. My B-12 is over 2000 and normal below 900. My family doctor wants me to go to the Cleveland Clinic. They are familiar with Ashesive Arachnoiditis and auto immune disease.
If someone would have told me that I needed to get the inflammation under control. I wouldn’t have developed all these other issues.
I didn’t know that a rheumatologist could help me.
Thank you! I am on a lot of Dr.Tennant plan. It wasn’t till they started treating me for Lupus that I got any relief. I truely believe that’s it caused all my inflammation. After all isn’t that what Arachnoiditis is? Inflammation of the arachnoid. By the time they found mine it was already Adhesive Arachnoiditis. Pain medication did not work for me. I started declining strong opioids. I felt like they had changed my brain chemistry and I no longer look forward to things or had any happiness. The medication I take for lupus has changed my life for the better. I think people Arachnoiditis can’t find doctors because of the scrutiny on writing prescriptions for opioids in the US. Steroids and lupus medication along with LDN has helped me more than any opioids. When I first was diagnosed with AA The only treatment was opioids. When I had to go to the emergency room due to excruciating pain from electrical shocks from just breathing they would give me a shot of steroids and anti-inflammatories and it was a miracle. I was on two different opioids during this time and they never touched the excruciating pain I had from uncontrollable electrical spasms from any movement in my body. When I went to see my rheumatologist that was the first thing I told her that medicine they gave me in the emergency room worked better than any opioids. When I told her I do not want any opioids she was so much more open to helping me with my plan to get relief. I guess I was lucky since I never got addicted to any of my pain medications. I guess I got sick and tired of being sick and tired and got off my behind and did something about it.
Apr 29, 2018 · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System
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.