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CLIPPERS: Looking to connect with others

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

I have zero plan because no medical folk in Tucson were knowledgeable of or willing to explore options. Not even the Mayo in AZ were interested. I could weep at how alone I have felt. I have been on my own, doing the best I could, hating my downward spiral and increasing dependence on my husband and friends. Thank you a million times for helping me see maybe a tiny light at the end of a dark tunnel. Liz

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Replies to "I have zero plan because no medical folk in Tucson were knowledgeable of or willing to..."
Colleen Young, Connect Director | @colleenyoung | May 2, 2023

@liztbnr, it can be so hard to advocate for your care and find a doctor who will work with you. You're alone in all this despite have the support of your husband and family. You don't want to be a burden. I get that.

I agree with @becsbuddy that the article she shared is excellent:
- Effective treatment of CLIPPERS with long-term use of rituximab https://nn.neurology.org/content/5/3/e448

Becky, I know that, like Liz, you had a long road before getting treatment that helped. Did you bring articles like this one to your doctor to help advocate for your care?

Liz, might sharing this article with your doctor open a new discussion about treatment options besides prednisone?

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Becky, Volunteer Mentor | @becsbuddy | May 2, 2023

@liztbnr Here is another article you can share with your doctors. Much of it is over my head, but much is understandable.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927899/
Any neurologist would be interested in reading the article
It’s a tough road, but I know you can do it!
Becky

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