Anyone have the FGFR3 antibody gene?

Very helpful- I need to get the numbers on my husband's blood work. It was also done at WashU.

Oops, through more searching I am now seeing that on one of my husband's records, it says he has FGFR3 associated small fiber predominant polyneuropathy.

I've never had Radiation or Chemo therapy. I was told that this is at this time, incurable. I was told there is no way to know how/why I developed this high AMT of this ANTIBODY GENE. BUT it's said it could be that a traumatic or trauma caused it to be so out of the norm. There's still an awful lot that I/we don't know. They're not doing much, that I've been told in the line of studies yet either.
If anyone knows any different, speak up!
Also, I'm looking into Medical cannabis as a solution since it's being used for other neurological disorders like MS and Epilepsy and other seizure type diseases.
Darlia

Thank you @thankful for your info and it's good that you are finding solutions too. For me this is not the issue as I do not take any statin.
Darlia

I was just thinking about the radiation/chemo agent link to neuropathy and it got me to wondering about those who have taken gadolinium, the agent use for MRI's that is linked to neuropathy: https://gadoliniumtoxicity.com/2014/10/25/pain-from-peripheral-neuropathy-can-be-caused-by-metals-like-gadolinium/

Wow!. this is very helpful info too. Thank you!. I personally have had many MRI's and always wondered how the contrast could or would affect me. This is outrageous because it is obviously too late once you've already used it and I for one, I had asked the medical personnel if the contrast was going to affect me in any adverse way. Of course they had responded with that there was no reason for concern... just drink lots of water they say to 'flush' it out of your system. Same when you get a CAT.. I have had lots of contrast in the past. Now I wonder if this has been a contributing factor. Also, I read the link to the more detailed info on Peripheral Neuropathy and will share it here as well.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
Darlia

Aha!. So have the Neurologist explain that to you all. If he has a high number for over 3000 then this antibody is affecting him of course. They have told me that there is only two ways to deal with the symptoms that they are aware of at this point. Immunotherapy and IV Solumedrol Steroids. I cant do the Immunotherapy because as it stands, I only have one kidney due to Renal Cell Carcinoma and removing that kidney. It processes through the kidneys and can cause kidney damage I have been told by them. The IV Solumedrol steroidal therapy would be 6 mnths of treatment and then after that I would have to wait for 2 years to know if the treatment had helped to stop the progress or helped the current damage. The side effects of the steroids though are serious and I have said for now I do not want to take them. So at this point, I am doing nothing with any drugs for neuropathy. I used to use Gabapentin but have since weaned off of that. It didn't really help the symptoms although it did help my Fibromyalgia a lot. ..... but the side effects like weight gain and making me more sleepy than I already get having these diseases made me decide to get off of it. I also have the underactive thyroid, Hashimoto's Thyroiditis so I have to take the generic for Synthroid daily to control this. Taking Pepcid for GERD and using CBD's to help with pain and sleep. Along with vitamins, and eating the best I can, that is it. Oh ya I take Tylenol too for pain when it's really bad. Probably twice a day. I can't take nsaids because I only have the one kidney and they process through the kidneys. I am hoping that looking into Houlistic medicine will be positive. If anyone knows about this, speak out! Thank you!
Darlia

🙁 my silence is deafening @darlia - I wished I knew something that would help. Wishing you some pain free times ahead and some answers for a treatment that will work. John

Darlia, that is a very informative article- thank you! I feel (like John) that I wish I could point you in the right direction for some relief and recovery. ;-( ~Laurie

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