Thanks Laurie (@lauries). I'm hoping @darlia may be able to offer some more information also. If you don't mind, will you keep us updated with your search?

John

Hi John and Laurie...
I've not got a new minutes now so I'll try to come back later. It's a complicating things. Even my neurologist is not sure about treatment. All of my other specialists have never even heard of it. One of my neurologists says he is referring me to a specific neurologist at Rochester Mayo. I'm waiting for them to call to set up an appt. I guess. I'm empathetic to others but it's very frustrating to live with medical issues as your main focus daily. Just keep swimming!
Best regards and happy thoughts

Hi Darlia, thank you for taking the time to respond. I know how hectic it can be and just keep swimming is a good way to put it. It would be interesting to learn who the Mayo neurologist is. I'm sure others could benefit knowing there is someone out there who understands what's going on with the FGFR3 antibody.

John

Yes, I've been using it for a long time! As far as the Neurologist.. he us referring me to a woman who he said specialized in Peripheral Neuropathy and hopes she can know more about what to do going forward. He isn't saying she knows for sure but that she knows more than he does in her studies.

Hi John~
The Neurologist at Mayo Rochester whom he is referring me to is Dr. Paola Sandroni. I didn't call on my own to make an appt. I had to wait for the them to contact me after they had an opening, after my Dr.'s referral was received there. Plus they had even sent me a letter first letting me know that they were booked up and would contact me when they could schedule me. So that all took about 2 months so it's a long process. And now the we won't be getting me in until April.
In addition to this, I have Gastroparesis, Hashimitos Thyroiditis, Fibromyalgia, Pelvic floor disfunction, Osteitis Pubis, Osteoarthritis, IBS just to name the main ones..so seeing the Neurologist is just the beginning, but I'm hoping to be taken under the care of the other specialists.
So again I say...Just Keep Swimming!
Darlia

Hi Darlia (@darlia) - It's good to hear from you. Thank you for the updates. Dr. Sandroni is a well respected neurologist at Rochester Mayo Clinic and I'm sure they will be able to help you. The weather will be much nicer in Rochester in April. If you are not familiar with the Rochester Mayo Clinic Campus, the following links may be helpful:

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
Mayo Building - Mayo Clinic Patient Video Guide - Minnesota - YouTube

John