← Return to CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Discussion

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Autoimmune Diseases | Last Active: Oct 13 3:46pm | Replies (312)
Comment receiving replies
@kirbyukat

Neurologist diagnosed me. MS test was negative. Relocating to St Augustine in 2 months and attempted to get in with Mayo Jacksonville without success. Difficult finding a neurologist with a true knowledge of this disorder.

Jump to this post

Replies to "Neurologist diagnosed me. MS test was negative. Relocating to St Augustine in 2 months and attempted..."
stwalker717 | @stwalker717 | Feb 25 4:24pm

You are right, they don’t know much more than we do yet, that is why l joined this site. I do my icing infusion every month, it helps , we see where we go.

VIEW AND REPLY
Becky, Volunteer Mentor | @becsbuddy | Feb 26 6:49pm

@kirbyukat If you’re having trouble getting into Mayo, Jacksonville, you can always call them and ask for recommendations of local dermatologists. You can also contact:
GARD, the Genetic And Rare Diseases organization:
https://rarediseases.info.nih.gov/
Or NORD , the National Organzation for Rare Diseases:
https://rarediseases.org/
Both organizations should be able to help you find a doctor.
Will you make a call and let me know what you learn?

VIEW AND REPLY
harley22 | @harley22 | Mar 11 10:46am

Relocating to Phoenix at some point and called Mayo Clinic for an appt.
I was told there were no neurological appts available at this time.
This was my last hope in finding some kind of hope with my CIDP.
I’ve been to 6-7 neurologists over the past 11 yrs with not one doc able to figure out what’s up with me, or a treatment to help my nerve pain.
Been on all the meds, IVIG infusions, and testing available including mris, spinal taps, EMGs, nerve biopsies, tests to r/o MS and Amyloidosis,etc.
Right now I take Tramadol 50 and salonpas pain patches as needed for pain.

VIEW AND REPLY