Anyone have the FGFR3 antibody gene?

@eoglover, You may want to take a look at the following older discussions where veterans and members have shared experiences with Agent Orange problems.

Agent Orange and Neurological Disorders:
-- https://connect.mayoclinic.org/discussion/agent-orange-and-neurological-disorders/
Agent Orange/Dioxin related illnesses:
-- https://connect.mayoclinic.org/discussion/agent-orangedioxin-related-illnesses/

Also, here are a couple of links that you may find helpful:
What you need to know about agent orange:
-- http://www.blogs.va.gov/VAntage/17744/10-things-every-veteran-know-agent-orange/
How to go about getting help/compensation:
-- http://www.benefits.va.gov/compensation/claims-postservice-agent_orange.asp

I am hoping to find someone who has gone through elevated FRFG3 (9000)...what is treatment, outlook? this is in relation to peripheral neuropathy. Thank you.!

Wow, steroids for 6 months. I don't think I could put my body thru that. If it were IVIG I would definitely do it but I avoid steroids like the plague.

I have this high titer detected. I would like the hear more. My neuropathy progesses

Agent orange aka paraquate?

Hello @0iggy11, Welcome to Connect. I think they both have TCDD in them.

"The two active ingredients in the Agent Orange herbicide combination were equal amounts of 2,4-dichlorophenoxyacetic acid (2,4-D) and 2,4,5-trichlorophenoxyacetic acid (2,4,5-T), which contained traces of 2,3,7,8-tetrachlorodibenzo-p-dioxin (TCDD). The dioxin TCDD was an unwanted byproduct of herbicide production."
-- https://www.publichealth.va.gov/exposures/agentorange/basics.asp

Were you exposed to Agent Orange?

I observed conversations of vets with neuropathy and frfg3 issues

I’m not a vet however was wondering if my 70’s exposures in harvests which
utilized Paraquat may have something to do with my issues today

@0iggy11 - Here is some information that may help you determine if you may have been affected.

Paraquat - Toxicity Summary: https://webwiser.nlm.nih.gov/substance?substanceId=528&identifier=Paraquat&identifierType=name&menuItemId=69&catId=79

I just joined. I was diagnosed in 2017 with AntiFGFR3 autoantibodies. I have been in pain for years prior with no explanation. I have been getting IVIG monthly for almost 4 years now. It helps but Doctors are not even sure of proper dosage levels. I used to be at 180 grams but now I am on a maintenance dose of 90 grams. There are some studies occurring. Most notably a longitudinal study out of St. Etienne U in France. Hopefully some answers will be found. Sadly there is emerging evidence that AntiFGFR3 neuropathy is not only sensory but can have motor nerve function involvement in it's pathogenesis. I am doing my best but it is a very hard road....

Hello @david1959, Welcome to Connect. Sorry to hear that you have not found much relief for your neuropathy symptoms. There is a clinical trial in phase 2 that sounds somewhat related to your condition -- IVIg for Small Fiber Neuropathy With Autoantibodies TS-HDS and FGFR3: https://clinicaltrials.gov/ct2/show/NCT03401073. They haven't posted any data that I can find but hopefully will soon. There are also a few other articles I found that may provide more information for you if you haven't already seen them.

-- Autoantibodies and Small-Fiber Neuropathy: https://neuropathycommons.org/neuropathy/causes-neuropathy/autoantibodies-and-small-fiber-neuropathy
-- Clinical characterisation of sensory neuropathy with anti-FGFR3 autoantibodies: https://pubmed.ncbi.nlm.nih.gov/31690697/

@doctorshelley may have some suggestions or more information to share on the topic. You mentioned having been in pain for years. The Foundation for Peripheral Neuropathy also has some complementary therapies listed on their site that may be helpful - https://www.foundationforpn.org/living-well/

Have you had to make any lifestyle changes or have you tried any complementary therapies to see if they might help?