I also suffer for the past 8+ years from trochleitis. I have received injections from the University of Michigan Hospital in Ann Arbor, MI. Although they have greatly reduced my pain there is a limit to how many of these injections you can get due to muscular atrophy at the sight of injection. I am now at my limit and am wondering if there is any other treatment? Do you know anything about a neurostimulator? Several years ago I had tests that although they were slightly elevated, confirmed I do not have an autoimmune disease.
I have MCTD, combination of Lupus, Scleroderma, Sjogren's, raynauds, vasospasm, vasculitis, etc et cetc, and after NUMEROUS visits to Bascom Palmer, the finest eye hospital in the country, the ultrasound tech found the cause of my suffering... not the doctors. I am grieving because I've suffered so long without knowing the cause. Now on 60 mg oral pred and pred eye drops, the acute phase is subdued (I also had an episode of episcleritis immediately prior to this flareup) but I've been suffering for years, and they just called it migraines and post-concussive syndrom from accidents and whiplash. It's like having a baby out of your eyes, you all know the pain.
I intend to save the shots for sever flareups, but I want to be able to read again. i have already applied for disability but still want to be able to function!! Any suggestions for practical life therapies??!!
I would like to talk to you as I too have MCTD and eye pain diagnosed a mayo as trochleitis w trochlear migraines. I also have raynauds, dry eyes, vasospams. Have had 5 trochlear injections. I don't know how to find you. So if you go to YouTube and type in 'trochleitis research ple...ase" you can rech me there. Ggw
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