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

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!

Thank you!

Thank you, John for the extra info. So I thought I would post a comment on this post since it's been awhile and since I am the publisher of this FGFR3 ANTIBODY post.
I'm not using any treatment, yet, for this Peripheral Neuropathy. But...my Neurologist at Missouri University has referred me to a specific Neurologist at the Mayo in Rochester! So they called me and said their schedules are only available for 3 mnths at a time and the first available for her is the end of March. So me and my husband decided we want to wait till April so the scheduler will have to call me at the beginning of January to set it up when they have the Dr's schedule. So I'm hoping to be going then. One thing she did say was that the stay in generally 5-7 business days so it sounds like, prepare to go for at least a week plus the drive.
In the interim, I have noticed that the numbness has progressed to more of the bottom of both feet and some of my toes, especially the big toes.. and I have area in the ankles on the inside that show little bluish-purplish lines, kind of like how broken varicose veins look. So the Neurologist told me that this discoloration is part of what the Neuropathy causes. So John or anyone out there that knows, is this correct?
Another thing I noticed is that the bottom area back of my heel where it's completely numb, it seems to bulge out. Any thoughts on this?
Another new symptom, prior to now, I've only had the numbness in my feet (have it in my left outer calf too where it began, and has spread) but no pain in the feet. But now, I am getting sharp shooting pains into different areas of my feet kind of randomly depending on what I'm doing and also occasional burning.
I also notice that the longer I am standing, the more numb my feet will get (like my whole foot!) So standing for any long periods is not good. I do have a Rollator to use if I need to. Once I sit down that does events goes away from the staging part.
The Neuropathy is causing this, the Neurologist says so my advice is, if you can, don't stand longer than you have too. Even with support, like standing against the counter it's still occurring.
At this point, my hope is that somewhere someone is going to discover that cannibus is the answer.
That is will maybe not reverse the damage but at least STOP it from progressing and help the symptoms!
Darlia

Darlia -- when I had my appointment with a Mayo neurologist and was diagnosed with small fiber peripheral neuropathy, the neurologist took pictures of my feet with his cellphone and asked for my permission to use the photos in a seminar he was giving on PN and hammer toes which are common in people with PN. I've had discoloration in my lower legs for many years which I think is edema. I've never had the pain or shooting pains in the feet just the numbness.

I heard a presentation last year at the Minnesota Neuropathy Association on medical cannibus. Here is a summary of his talk:

Nick Rich, PharmD (doctor of pharmacy), a compounding pharmacist, owner of Lake Elmo Pharmacy, spoke to us about: alternative treatments to conventional medicine for the treatment of neuropathic pain. He explained what a compounding pharmacist does, and how it may be different from what your pharmacist does. He has over 13 years of experience as a compounding pharmacist, and is one of two accredited compounding pharmacies in Minnesota. The other compounding pharmacy being the Mayo Clinic in Rochester. More information can be found on the Lake Elmo Pharmacy website -- http://www.lakeelmopharmacy.com/pain-management-2.html.

It may be something to discuss with the Mayo Neurologist if a compounded medication is an option for you.

I like your tagline from an earlier post - "Keep Swimming!"

John

John~
I appreciate ALL of the is info. I didn't know that Minnesota had medical marijuana! Good to know.
So yes if they decide that it will help me I'm game. Why do you not use it? I'm glad to hear too that this Neurologist comes recommended.
I have to get my insurance ducks in a row too before I go to Mayo.
I really do find it very helpful that you provide the links to what we need too. Yes, than you for acknowledging the phrase Just Keep Swimming... I've been using that for my signature statement for years now! Thank you again!
"Just Keep Swimming, Just Keep Swimming, Just Keep Swimming, Swimming, Swimming!"
Darlia

The medical Cannibus is a recent thing in MN and you to get on a state approved list I think by a pain management doctor but not sure.

@johnbishop Seriously?? I surely live in the ozone.

@parus -- yes indeed
http://www.health.state.mn.us/topics/cannabis/

Let me know what the Mayo Clinic says. They said my neuropathy was caused by an auto immune issue. I do believe something systemic caused this. They gave me gaberpentin (sp) to handle the pain and not help repair the nerves (a band-aid not a solution). They never did any further blood work like this test you had done. I don't have much faith in doctors after 4 years of battling this immune disease. You definitely need to get copies of all tests done which includes CD's of radiology tests. I've discovered even the people reading the tests miss things and when i felt they were not catching something I went to another specialist for second and third opinion. Sometimes they all had ideas and not all were the same. I'm finally getting better which I contribute to my research and diligence in documenting everything. I caught an allergy that I had causing sores and blisters which 3 doctors said was related to auto-immune BUT it was actually an allergy to Bactrin (antibiotic). Thanks for info on tests as I'll ensure my doctor runs this one.