Hi...Im new to the group and have posted one inquiry but wish to post another as well as properly introduce myself. I had been diagnosed with a rare autoimmune disease 30 years ago. Cogans syndrome primarily affect the 8th nerve of the ear (I lost my hearing completely) as well as eye nerves (keritits) vestibular dysfunction and as the years went by they considered vasculitis as part of the disease, too. It's very rare and much like other autoimmune disease's it has overlap. However; 10 years ago, before CLIPPERS had been named, my disease changed and became very MS like with CNS issues that no neurologist has been able to pin pointed. MS not MS, CNS vasculitis not CNS vasculitis, inflammation etc. but the brain and headaches going down the spinal cord that causes, what for the first time, I recognize as CLIPPERS is profound in how it's changed my life. The circumstances with me is that since I had already had an autoimmune diagnosis, the drugs (prednisone and Imuran) were simply prescribed but the brain issues are treated under the umbrella of autoimmune disease rather than specified. That's not fully bad, but I feel clarification would perhaps tweak the drugs. A couple of weeks ago, preparing for my final neurologist apt with Dr. Najjar, who is known for his book Brain on Fire (and I do have hopes with this apt.) rather than google brain inflammation, I googled inflammation in Pons, Ganglia, white matter, where my lesions are. I also have some signs of vasculitis but not enough for CNS vasculitis. What came up was my eureka moment, what came up was Clippers including the peppering and having limited vasculitis etc.
So while I recognize the symptoms for the first time as mine, my uninformed rheumatologist wanted to prescribed Rituxan and while it's used for vasculitis I don't believe it's used for CLIPPERS and it has risks and I don't want to go that route if the disease doesn't require.
Anyway...I had one question...the process of CLIPPERS and the flare will induce headaches and pains down the cord and into limbs intermittently, which I recognize in what I read here and on the net. But for me when I raise my prednisone and the inflammatory process is being pushed down I have DRAMATIC what I've learned to call REVERSAL pains. It relieves and function is restored, but it's almost more painful than the slower inflammatory process especially when the dose is steroids is high because the activity of reversing is constrained and fast.
Does anyone experience this? Just wondering. Meanwhile my apt is Feb 4 and I hope to have greater clarity if my brain inflammation and lesions are consistent with CLIPPERS. Interestingly enough, when my disease changed it was 2003 so it was before identification as I read it wasn't identified before 2010 though it likely existed.
Anyway...that's some of my story...Im pleased to have found this group and appreciate having the chance to listen in and share.