Anyone have the FGFR3 antibody gene?

Hi, @kim61 - since you were talking about FGFR3 antibody causing severe small fiber neuropathy, I've moved your post here to a discussion on FGFR3 antibody in the Connect Neuropathy group.

I'd like to tag @darlia @johnbishop @jenna12 @stevetolnai who've been involved in this discussion to talk with you about the pain and burning that have been intensified since the IVIG therapy, as well as how this disease has affected your whole life.

How have you been lately? Do you have another IVIG treatment coming up?

Hello @darlia, welcome to Mayo Connect. We are happy you found us. Connect is a great place to ask questions, share your story and learn from others with similar health issues. I'm hoping someone else has information they can share with you on the FGFR3 antibody gene. I had not heard of it as a cause for neuropathy. I did a search and found the following information:

National Institutes of Health - Antifibroblast growth factor receptor 3 antibodies identify a subgroup of patients with sensory neuropathy.
https://www.ncbi.nlm.nih.gov/pubmed/25628376
I also did a search using Google Scholar (https://scholar.google.com/) which is great for finding research articles. I used "fgfr3 clinical trials" for the search phrase and it came up with the following links:
https://scholar.google.com/scholar?hl=en&q=fgfr3+clinical+trials&btnG=&as_sdt=1%2C24&as_sdtp=
On the Google Scholar search engine you can refine your search to the most recent information by clicking the year 2017 on the left side of the window.

Did the neurologist give you the "idiopathic" diagnosis? I have idiopathic small fiber neuropathy but only have the numbness in my legs and feet. I do take some natural supplements and vitamins that appears to have stopped the progression. Here is a bookmark link to my story I shared in another post on Connect:
https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=13af2ed380
John

I see this is an old thread, but the question asked alerted me to two things found on my blood word, Borderline B-12 (for which I am now taking B-12, 3000 mcg, sublingual), and an elevated anti-HDS which is actually associated with atonal sensory neuropathies. The sensory neuropathy has been my operating diagnosis. I could not find any info on-line about possible treatment for the elevated anti-HSD. Is there any information you have on this? Thanks.

Hi Jim (@jimmccarl) - that's a good question. I'm pretty sure genomic testing has to be done to tell whether or not you have the gene. Here's some information on National Institutes of Health site:
https://ghr.nlm.nih.gov/gene/FGFR3
@lauries - this might be helpful for you also. I just found it and it seems to have a lot of good information and related links in the page.

John

Hello everyone I have some new symptoms that I want to investigate. The last couple of weeks I've been waking up with really bad pain throbbing in my wrist hands and arms lower arms. Stiffness too and the pain even when using some tumeric or Tylenol doesn't go away during the day it just gets a little bit better. Are these symptoms of peripheral neuropathy? Also it seems to be worse in my right wrist and it does seem swollen in my right wrist area on the outside of my hand.
Darlia

Hello Darlia, I have 10000 Igg vs fgfr3 I have all symptoms you mentioned above

Hi @darlia, I have the elevated FGFR3 antibody also. My neurologist sent my blood to St Louis also and this was the diagnosis. I have had severe peripheral neuropathy in my feet for a few years which they thought was related to diabetes but apparently it is not oh, it has been uncontrolled for at least 2 years now and create so much pain for me but I had to stop working as a nurse due to all of the medications I have to take to help me get through each day. I also get very sharp nerve pain in other places like my hands my fingers my thighs my ankles just wherever it decides to hit can get. I started IVIG therapy for months ago and I think that it's helping a little bit but I am suffering quite a few side effects so we will see how things go. I will always available to talk to if you want to talk more about our symptoms and see how they compare. Take care, Kim

Hi, @adamek3638 - welcome to Mayo Clinic Connect. You mentioned you have symptoms similar to @darlia. Will you share more about what you are experiencing?

hot sensation in my legs like 'burning' numbness, weakness. Inability to sweat - thus impaired thermoregulation. Constantly dry skin.