← Return to CLIPPERS: Looking to connect with others

Discussion

CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)
Comment receiving replies
@liztbnr

Mayo Fl diagnosed me 12 years ago, was put on pred and have remained on it since. It was supposed to, hopefully, be a firewall, forget it. I started out using a cane and am now in need of walker/transporter/wheelchair. No doctors in AZ, as far as I know. I have called several, and I just get a puzzled response. "What? CLIPPERS?" No alternate meds suggested. Stone wall. My NP has no idea, a local neuro was same, as was the Mayo neuro in Scottsdale. I am just floating here, dizzy and bloated. And, yes, pretty much defeated.

Jump to this post

Replies to "Mayo Fl diagnosed me 12 years ago, was put on pred and have remained on it..."
Becky, Volunteer Mentor | @becsbuddy | May 1, 2023

@liztbnr Oh, gracious, I can’t believe that you are unable to find a doctor! That’s terrible! Here is a link to an organization that collects info/resources on genetic and rare diseases. They have a section on finding a doctor, so please try calling them.
https://rarediseases.info.nih.gov/contact/
And you’ve been on prednisone all these years. A good doctor will help you taper off the prednisone and get you on a safe immunosuppressant . I have my ups and downs, but really, I’ doing pretty well on Myfortic, an immunosuppressant, and lo dose prednisone.
I’ll try to send you some articles on Clippers. This article is really excellent. https://nn.neurology.org/content/5/3/e448. Read it and let me know what you think.
Do you have a plan going forward?

VIEW AND REPLY