Anyone have the FGFR3 antibody gene?

Hello John, Thank you for the links. Yes I have tried numerous therapies over the years ( prior to diagnosis ) with varying results. To date IVIG has helped the most. I have made life style changes over the years, voluntary and involuntary, to try and modulate the severity of this disease. I do wish there was more research completed involving AntiFGFR3 autoantibodies ( My level is around 35000 ) in order to facilitate a possible cure. I am hoping the St. Etienne study has some answers.

Thank you John for the reply and the welcome. I was researching on the Mayo Clinic website because I have paperwork I am filing out for my attorney here in Missouri where I live now on my SS disability case and I had gone to the Mayo Clinic as a patient when I lived in the Phoenix area for many years. They want you to list your prior medical help so I listed Mayo. I then saw that there was the support community and decided to give it a try. I was told by my Neurologist whom I see here at the University of Missouri Hospital in Columbia, MO, that my neuropathy is FGFR3 Neuropathy, but had been told prior that after my nerve tests it is Peripheral Neuropathy. I have in my feet and legs. It started in my left leg just randomly as a spot on my left calf that was kind of numb. That was back in 2011 or 2012 I believe. It has progressed to my heels being numb in spots and into parts of my feet, mostly the left. Now my hands are having tingling on and off too. My right leg has a little, but not much as of yet. The only treatment I have been told so far that there is as this is a rare condition and that the medical community has just been made aware of this in the last 2 years, he said, is an IV SOLUMEDROL steroid that he wants to do for 6 months and then says I won't even see any diff until at least 2 yrs!. Or there is another treatment that involves being administered by IV that has fractions of blood, immunogentherapy or something. I spelled it wrong. Anyway, it is not an option for me because the treatment is likely to cause renal failure and I only have one kidney as I am a cancer survivor to have lost my right kidney to renal cell carcinoma in 2008. So, at this point, he says that the steroids are the only treatment. I asked what if I DID NOTHING? He says, well then for sure it will just progress. The steroid treatment though is not a guarantee of help either, it is kind of a shot or chance. I also have the gastroparesis which until now had an unknown source because I am pre-diabetic, but NOT diabetic. Normally GASTROPARESIS happens because of diabetes. So, if I don't do anything, this condition is just probably going to get worse, The downside is that I have to watch everything I eat, most of the time, I am pretty good, but it is hard to not eat any raw veggies or fruit until they are broken down like in a smoothy which is ok. The key is to have the food already broken down, I eat pouches of baby food, which surprisingly is pretty good nowadays. LOL. I like the fruity/sweetpotato ones or the fruit mixed with other veggies. I also like from Walmart the Organic SuperFood dehydrated fruits and veggies and probiotics mix. It is very green and it has good spirilina and alphalfa in it. I mix it in Pineapple or Grape Juice. I get my vitamins that way too.
So, right now I am waiting to get an abdominal MRI and checked out out by the Nephrologist that my one kidney is okay to undergo the start of the steroid treatment. But in the meantime, I am searching for other help. Reading about the side effects of the steroidal treatment is scarey and I am very reluctant to do it. Any info you can provide on this would be much appreciated. Thanks again!
Darlia

I just found your post because I was looking into a clinical study for myself, and you have to have the antibody you are mentioning, or another antibody, that is causing Small Fiber Neuropathy. I don't know if that's the disorder you have, but take a look at the study. There may be some helpful info even if that's not what you have (this intravenous treatment they are studying) . Best of Luck.
(It's not letting me post a link, so search for this: "IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS, FGFR-3, or Plexin D1 Antibodies")

Hello @seanywonton, Welcome to Connect. I see that you wanted to post a link and thought I would share the link for you since new members cannot post links for a short period of time to prevent spamming and advertising in our discussions.

--- IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS, FGFR-3, or Plexin D1 Antibodies: https://clinicaltrials.gov/ct2/show/NCT04153422.

Have you signed up for a clinical trial? Do you mind sharing a little more about your neuropathy diagnosis?

I found this thread today. I was just told my FGFR3 level was 10,000. Was IVIG helpful for anyone? I am a first grade teacher and I am worried about the side effects of IVIG while I am teaching. Just to understand, it sounds like the FGFR3 can be the underlying cause of small fiber neuropathy?

I found this thread today. I was just told my FGFR3 level was 10,000. Was IVIG helpful for anyone? I am a first grade teacher and I am worried about the side effects of IVIG while I am teaching. Just to understand, it sounds like the FGFR3 can be the underlying cause of small fiber neuropathy?

Hi- I was wondering if you ever went forward with IVIG? I was diagnosed with the FGFR3 antibody in late 2019/early 2020. By the time we got around to discussing treatment options, it was covid lockdown and the idea of going out for infusions or doing home infusions with a stranger sounded crazy.

But then my neurologist left and so far there hasn’t been a provider willing to implant her plan of care or who felt knowledgeable. I’m considering it again, but because the blood test isn’t fda approved and neither is IVIG for this purpose, my insurance may not cover it and it’s kind of a toss-up whether or not it would help. So I’ve just been sitting on it. I wanted to ask what your experience has been?