Anyone have the FGFR3 antibody gene?

Where did you go to have this diagnosis? All professionals I have gone to diagnose the neuropathy but do not try to find a cause.
Jim Mc

Thank you!

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:

@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

My husband has Radiation-Induced Peripheral Neuropathy (RIPN), Radiation-Induced Brachial Plexopathy (RIBP) and Chemo-Induced Peripheral Neuropathy (CIPN). His neurologist just mentioned in his medical report that the FGFR3 showed up in his blood work. He didn't call it FGFR3 Neuropathy. From what I know, neuropathy is directly caused by radiation or chemo given in as a cancer treatment. In chemotherapy treatment, the chemo agents, Cisplatin or Cipro, cross the brain barrier. In radiation, it damages the nerves as well.I called the tech support for the manufacturer of the FGFR3 antibody that is manufactured from rabbit genes and it is made specifically for research only, not to be sold by to a third party. However, I found clinical trials using it for cancer treatments (which must be how my husband got it, although that was back in 2008). FGFR3 blocks peptide PEP-1617, which is necessary for bone growth, and can be manufactured 'normally' as an antigen in our own bodies to attack this peptide (but to me, that would mean it is now an auto-immune issue) but high levels in the blood would be suspicious, or it can be made synthetically in a lab and delivered to the body to fight off cancers and other things relating to growth (even though the manufacturer is not condoning its use except for research purposes).

Great find- that explains a lot.

Yes, I've been using it for a long time! As far as the Neurologist.. he us referring me to a woman who he said specialized in Peripheral Neuropathy and hopes she can know more about what to do going forward. He isn't saying she knows for sure but that she knows more than he does in her studies.

@jimmccarl and @johnbishop. Greetings. I thought I would weigh in on the neuropathy discussion. I have not been following all the posts on this, but I wanted to share with the group my experience with this problem. I had been struggling walking close to a mile or even standing still for awhile when my feet would get numb and I felt I needed to sit for a moment. As I pursued trying to get answers to this problem, my GP ordered up several tests which in the end ruled out most of the "bad things" it could be, but no solution. That was not good enough for me and so I continued pushing for an answer. I asked my cardiologist if the statin drug I was on could be the problem and got the answer that we hear all the time in that it would be more likely muscle aches, but not the neuropathy I was experiencing. I decided with my GP that I would change to a different statin, but keep the same dosage. (Went to Simvastatin 40mg from Atorvastatin 40mg) and within a week there was a noticeable change for the good. I still have some and my feet seem to get cold easily which they did before, but I can walk several miles w/o any significant numbness. Hopes this helps, it sure did me.

My Neurologist is at the Missouri University in Columbia Missouri. He sent my blood to Washington University in St. Louis and about 5 weeks later it came back with positive (very high level, like 14,000) for the FGFR3 ANTIBODY. IT says on the report that this is known to be the cause of sensory neuropathies. It says "lgG vs FGFR3 normal is less than 3,000. It says "lgG in this serum binds Fibroblast Growth Factor Receptor-3. Serum lgG binding to FGFR3 had been associated with Axonal Sensory Neuropathies. Some patients have sensory ataxia or pain."

So there you have it!
Best regards
Darlene

You'll have to get referred to a neurologist for testing- that's what my husband had to go thru once his symptoms starting.

Hi @thankful, thank you for the information - it's great that you are pushing for answers. For too many years I just let things go and didn't push to find out why my feet and legs were going numb. After getting my diagnosis of idiopathic small fiber peripheral neuropathy I was on my way to trying to find something that helps me - I don't have any pain, just the numbness. I can relate to not being able to walk very far and also not being able to stand a long time or for that matter sit a long time. I also have polymyalgia rheumatica (PMR). In my research along the way I discovered that statins make neuropathy worse and can actually cause it in some cases. My primary care doctor tried to put me on simvastatin also but I told her I would work on my diet to help bring down the cholesterol numbers. She also tried to put me on gabapentin which only helps when you have pain with your PN. Here are just a few references I found on statins:

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/

Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1

Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

John