@suec147 @kristyinoregon
Sue,

Your physical conditions are as close to mine as any I've heard about on Mayor Clinic Connect, which would make each of us very good at understanding what the other is living with! It is hard to explain to non-afflicted persons what it is like. I have also had relapses where these strange sensations start to spread to the other side of my body, but are reversed by steroids. Your eye impairment, however, is much more severe than mine. Hope any spreading to your left eye has stopped and stays away.

Yes, it does seem that finding the right balance of medications is a key objective, with the wrong selections setting one back. After my 17 days in the hospital last October, I went through three Pred packs, each going down to 5mg, before the last of these diminished my strength and well-being so much that it landed me back in a hospital for IV steroids and the conclusion that it was Clippers and that I needed steroids regularly. Been on 20mg daily for about 3 months now and I've been pretty stable. For the last few weeks I've been into lots of exercises of various types and it has gotten me to feel I am getting back to normal. I even fantasize that exercise is the cure for Clippers!

I don't yet have any new input from the doctor I saw at NYU Langone. I will be going down to NYC this coming Monday for a PET CT scan and an MRI Brain Vessel w&wo IVC, which he set up for me. One of the things he wants to check is whether sarcadosis or something else could be a cause of my symptoms. At present I will not have another appointment with him until September 27, unless he comes up with something or my conditions change. I will be happy to keep you informed about his findings.

Meanwhile, thanks for reaching out to me. Comradery in these experiences is a big plus, in my opinion. Have a good weekend, Sue!

Don