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Questions on IVIg treatment for what I have: Axonal sensory-motor
Neuropathy | Last Active: Sep 11, 2023 | Replies (40)Comment receiving replies
I have Sjogren's small fiber neuropathy manafesting as sensory ataxia. For over two years now no one seemed to know what I had and I have nearly lost the use of my legs. Finally, thanks to a new rheumatologist, I have a diagnosis and a treatment, now I need to find programs that help pay for it. Anyone who has tried it please share your experience.
Replies to "I have Sjogren's small fiber neuropathy manafesting as sensory ataxia. For over two years now no..."
@suetex, I moved your question about IVIG treatment to this existing discussion so you can read previous posts and connect with other members like you easily:
- Questions on IVIg treatment for what I have: Axonal sensory-motor: https://connect.mayoclinic.org/discussion/questions-on-ivig-treatment-for-what-i-have-axonal-sensory-motor/
You may also be interested in this related discussion:
- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
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I also have SFN. Took 3 years to diagnose. It also took 3 neurologists to figure it out. None even suggested the treatment. I’m seeing Dr. Oaklander at Mass General Hospital. Unfortunately, not until January. She is a proponent of IVIG. At least she was in one of her lectures I listened to. I’m also looking for anyone who has experienced this treatment. I’ve tried literally everything!!!! So I’m skeptical. Can only hope I’m wrong.
GOOD LUCK!!!