B cells? And chemo? I haven't had any discussions like that. I was told Immunotherapy or solumedrol steroids by IV. I can't do either.
Darlia

Yes HE said that was the only known solution to this at the moment. which is why I started looking into other things and thankfully found you here!

Where are your Dr's located? Just to be sure I understand... Are you sure you were told that your blood/lab test show that you have the FGFR3 ANTIBODY at a high number? I've never been told I have high amt of B cells or need chemo or bone marrow treatments. What you are describing don't sound like anything neurological. The referral from my neurologist to a specific Peripheral Neurological neurologist @Mayo is for the Rochester locale only! He specified her...and my understanding is that you must have a referral to be seen. I've been told b @johnbishop that they've made lots of breakthroughs with neuropathy..so we'll see!
Just do the best we can!
Darlia

I am at 4000 on the FGFR3
Doc is in phoenix

So for further clarification… About eight years ago I was diagnosed with autoimmune disease with perphial neuropathy
Until just recently I have found out that I have had this FGFR3 antibody at 4000
Now the issue has gone beyond my legs and feet and I have a bilaterally in both of my hands and my whole right arm is feeling numb and very Weak.
I am trying desperately to find a solution to this is my career is in muscle and rehabilitation therapy and I need both my arms and legs for the job that I do.
I hope that helps?

interesting.. I used to live in the Valley and went to Mayo there back in 2009 but for other issues at the time. My Peripheral Neuropathy wasn't diagnosed till when I was living here in NE Missouri, I think it was 2014. the finding of the FGFR3 antibody which prior to this, I'd never heard of..was done by my neurologist sending my lab out to St. Louis. my number was very high.. 14,000+..
can you tell us more about this B cell?//

@stevetolnai and @darlia,
I'm just catching up with your conversation about docs and Mayo Clinic locations, and thought I'd offer a couple of clarifications to help answer questions. Strictly speaking one does not need a doctor referral to request an appointment at Mayo Clinic. You can self-refer. However, getting a doctor's referral can be helpful as they can provide all the necessary diagnostic details and you don't have to be the go-between. Specialists at Mayo Clinic work in co-operative, multi-disciplinary teams across all 3 campuses, meaning that if you see a neurologist at the Arizona campus your team can and will consult with neurologists in Minnesota and Florida when necessary.

For the specific neurologist that Darlia has been referred to, you may need a doctor's referral if this is what she was told. I can't confirm. But in general, you can self-refer.

Steve, was your last visit to Mayo Clinic in Arizona?

The neurologist I see for the Peripheral Neuropathy referred me to a specific mayo neurologist because he said she is top notch for peripheral neuropathy. Then their office called me to make the appt.

He also said that Rochester I a the best!