Any Adhesive Arachnoiditis members here?

Not a problem @galady. On the website, you can search for specific topics by clicking on the magnifying glass symbol and searching for keywords or topics. After you search, you can narrow your results on the right side of your screen. It can be a bit confusing at times, so don't hesitate to ask questions! You can also click on the Groups tab at the top of the screen and find specific groups to look through. If you click on a group it will bring up all of the discussions that have been started in that group. There is a lot to offer on Connect, I suggest doing some exploring.

I hate these bladder issues. Can anything be done for that? As if we don't have enough issues.

Happening all over. All doctors are scared to death, thus just give us tylenol! Ha, what a laugh! I guess if you cut your arm off, it would still be tylenol.

I'm also looking for dr that treats AA

@galady - are you looking for suggestions across the United States for a doctor adhesive arachnoiditis treatment?

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.

Hi, @caklady - thanks for sharing your experience with seeing improvements in your adhesive arachnoiditis through visiting a rheumatologist and addressing your inflammation.

I'd like to bring into this conversation others who may be interested in reading about and discussing your experience, like @mdmo @ursweetpam @rachelarachgirl @gerisues @rpennino @peggyella @christinasuit.

@caklady - wondering if the steroids and getting your numbers down have reduced any symptoms you were experiencing before?

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.

Yes, I live in East TN and a spine surgeon caused me to have arachnoiditis and cauda equina syndrome seven years ago. I have been to many doctors who all covered up the problem. I am prescribed high doses of pain medication, but it has no effect on the sacral/anal pain that has destroyed my life. Are there really any doctors that treat these problems?

I don't understand why more research isn't being done for this terrible disease.