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CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: 2 days ago | Replies (308)

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@donnyboy

I am a new member who received a CLIPPERS diagnosis from my neurologist 4 days ago. I would like to post a description of my condition, but don't know how to, since there is no CLIPPERS support group. Is posting here the way to go? Thanks for getting me the name of the doctor in Arizona.

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Replies to "I am a new member who received a CLIPPERS diagnosis from my neurologist 4 days ago...."

This is my first post. I am donnyboy, 82 years old, healthy all my life and exercise-loving, until having to be hospitalized in October for 15 days, because of vision impairment in my left eye and strange and constant sensations in my left hand, arm and side. Was treated with 5 days of high intensity IV steroids and a blood cleansing procedure called aphoresis. After discharge I was placed on a tapering-down prednisone packet. Did well and thought with OT and PT could be back to cross-country skiing in January. Progressed towards getting back to normal.

My progress slowed however, I was getting tired, and I received a second tapering-down Pred packet. This helped, but a month or so after finishing the packet, tiredness and a lack of stamina grew, along with similar strange sensations on the right side of my body and an expansion of my left side strange feelings. Back to the neurological ward at the hospital April 2-9 for another round of high intensity IV steroids. Doing better now, on my third Pred packet and likely to remain on Pred indefinitely. Look forward to cross-country skiing next winter, and focusing on my OT and PT exercises. Will be seeing a specialist in NYC for a second or supplemental consult on June 12.

Happy to share my story with anyone reading this, to respond as appropriate, and to begin reading more of the posts already posted.