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Becky, Volunteer Mentor (@becsbuddy)

CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Nov 4, 2022 | Replies (75)

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Greetings! Newly diagnosed CLIPPERS patent here. I'm happy to have found this forum and hope to share and gain lots of valuable info. I'm just a few days home from the hospital and my vision is quite bad so I'll be back in future days to tell my story and read more about all of yours. Basically, I'm a fairly fit 55 year old who suddenly came down with facial, hand and left leg numbness and weakness followed by double vision, loss of balance and increasing fatigue. Initially we got a false positive for Lyme disease so I did a 21 day course of Doxycycline but my symptoms came right back and I was hospitalized. I started high-dose IV Salumedrol and now I'm discharged and "pulsing" on high-dose oral Prednisolone at home, tapering down over the next few weeks. So far the steroids have been a miracle with each day bringing a diminishment of symptoms. The diplopia and nystagmus are the last ones still hanging on but getting better. The challenge now will be learning to live on steroids. I'm so happy to have found you, thank you! I'll write more as the story unfolds and my eyes improve. If anyone wants to connect on Instagram you'll find me @amestanko. Best wishes and gratitude ~ Ame in San Diego, CA.

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Replies to "Greetings! Newly diagnosed CLIPPERS patent here. I'm happy to have found this forum and hope to..."

Welcome @astanko We’re glad you found this site. And you sound like you’re doing OK. Did you have a brain biopsy to confirm the clippers? There seem to be only a few of us who exist with clippers! I’ve been dealing with this for about 4 years.
Since you are on hi dose steroids, have you had a DEXA scan to check the health of your bones. Prednisone can really do a job on bones and eyes. :-(. I’m dealing with osteoporosis now and also just had surgery for cataracts.
What is the doctor’s next plan once your prednisone gets low? I’m now on Mycophenolate as i taper off the prednisone. Sorry, I’m giving you too much info when your so new to all this.
Do you have a good neurologist that you like?

@astanko wondering how you’re doing. Has anything changed/improved for you? Hope all is well.