Anyone have the FGFR3 antibody gene?

So now the Dr./Neurologist has referred to my disease as Polyneuropathy. So I looked it up.. It says..Polyneuropathy (poly- + neuro- + -pathy) is damage or disease affecting peripheral nerves (peripheral neuropathy) in roughly the same areas on both sides of the body, featuring weakness, numbness, and burning pain.

Hi Darlia, here is one of the more easier to understand explanations of polyneuropathy (actually of neuropathy in general) by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
https://youtu.be/8nrv7lRvvwU

John

Now neurologist is referring me to Neurologist in Rochester, Mayo. I will proceed to give it a shot but I don't know when yet. Waiting...
Darlia

Hello, I just ran across this site after I started to research my husband's medical records to work on his disability. He also has the FGFR3 antibody. He had cisplatin for squamous cell throat cancer and now has Chemo-Induced Peripheral Neuropathy, Radiation-Induced Peripheral Neuropathy and Radiation-Induced Brachial Plexopathy which is progressing to his lower extremities and worsening over time. We live in St Louis and that's where he got tested for it.

Hello @lauries, welcome to Connect. We are glad you found us. It's a good place to ask questions and learn what others with similar health concerns are doing for treatments. I'm tagging @darlia who started the FGFR3 discussion in her search for information to see if she has some additional suggestions or information.

@lauries have the doctors suggested or started any treatments for your husband?

A good tool for learning more about FGFR3 is Google Scholar (https://scholar.google.com/). I did a search for FGFR3 - here are the results:
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=FGFR3&btnG=

John

Hello John, my husband is not currently on any 'remedy' for this, but it is getting worse. There has been some discussion of nerve transfers but I doubt my husband would want to do this. I am currently trying to find out more about this FGFR3 antibody and what it actually does in the body so thank you for your links!
~Laurie

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

Hi @lauries
I also want to let you know about the Head & Neck Cancer discussion group here on Connect too
- Head and neck cancer https://connect.mayoclinic.org/discussion/head-and-neck-cancer/

Welcome!