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Darlia
@darlia

Posts: 132
Joined: Jul 21, 2017

FGFR3 ANTIBODY

Posted by @darlia, Jul 21, 2017

I was recently diagnosed with the FGFR3 ANTIBODY GENE. It is RARE.
My Neurologist found this by sending my blood sample to a special St. Louis lab. This means my NEUROPATHY is being caused by this ANTIBODY which up till this discovery, my neurologists said my cause for neuropathy and gastroparesis was UNKNOWN! I don’t have diabetes.
1. I am now looking for others who have this incurable ANTIBODY. I’ve been told the only treatment I can get is an IV Solumedrol steroids series for 6 months. I am concerned though about side effects and reluctant to have this treatment. Any others who have please give me your experience. 2. Also, I am looking FOR any info I can find about how this can be dealt with in any other way, even if there is anything of a homeopathic nature.
3. I am also looking for if there are any clinical studies.

REPLY

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

@johnbishop

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

Jump to this post

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

@johnbishop

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

Jump to this post

I can understand your concerns. You have a lot on your plate. I did another search on Google Scholar for IV SOLU MEDROL treatment side effects and it has some information but I’m not sure it’s what you are looking for:
https://scholar.google.com/scholar?hl=en&as_sdt=0,24&q=IV+SOLU+MEDROL+treatment+side+effects

Liked by Darlia

@johnbishop

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

Jump to this post

Thank you so much for the help! I will read all of this when I have a chance.
Darlia

Hi Darlia (@darlia) – I thought I would check to see how you are doing. Hope everything is going OK for you.

John

Liked by Darlia

The only thing most of us have is hope…we lose hope and we are lost.

@johnbishop

Hi Darlia (@darlia) – I thought I would check to see how you are doing. Hope everything is going OK for you.

John

Jump to this post

Hi John,

Thank you for the concerning note. I’m still here! We had to have a new roof put on our old house and my husband was doing the work to. Then I had to sure everyone had food, drinks, etc. I’m going to have to take a week to recuperate! But III m feeling more tired, more pain (prob fibro too) and also trying to coordinate Dr visits etc and I haven’t had a chance to set up the FB questions I know they want me to answer in that group you directed me to. So they probably deleted me by now!
I do have a newer symptom. I am itchy on my skin on my arms, back, chest, in my ears, my scalp and the bottom of my feet (randomly too). And when it’s worse it’s so irritating because I am itchy and theres nothing that I can do. I did try hot shower and I use Aveeno body wash, but it makes me feel better but does not get rid of it. Any idea about this? It very well can be a symptom from the FGFR3 ANTIBODY TOO.
Darlia C

@johnbishop

Hi Darlia (@darlia) – I thought I would check to see how you are doing. Hope everything is going OK for you.

John

Jump to this post

Hi Darlia (@darlia),

Thanks for the update. Sounds like you have been busy and sometimes that can be a really good thing. I have had itchy skin that comes and goes with my neuropathy but it hasn’t been too bad. Others that I have talked to shared similar symptoms with their neuropathy. Some people have found relief using magnesium lotion. I’ve used this on my legs and it helps keep the skin moist which I think helps. Others have found relief with an epsom salts lotion or bath. I have not tried this. Hopefully some other Connect members can share what has worked for them.

John

@johnbishop

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

Jump to this post

I need to take time to look at the vitamins you suggest. Or if you can list them briefly here that would be great!
Also I want to answer the ? About idiopathic. I found out that term means that the origin is unknown.
Mine was until the discovery of the FGFR3 ANTIBODY. THIS IS THE SUPPOSED CAUSE.
For others out there. Ask to have your blood tested for this. Not all labs can do it. Mine was sent to a big University. Check in your area .
Darlia

Being referred to St. Luke’s Hospital in KC, MO. Hope the Neurologist there can give some help. My Dr’s here can do nothing. Now if I can get to Mayo in Scottsdale or Phoenix this Winter (I am making an appt)
We would be going as Winter visitors anyway so I want to be having an appt in advance.
I am getting a rollator soon to use for walking/sitting as my pelvic has weakened and lots of pain if I walk or stand more than about an hour a day. I’ve been going to a pelvic Dr. And pelvic PT. Also in OT for my hands now. The tingling and numbness in my fingers and hands has been speeding up lately. I’m sure when it gets cold it would be worse. It would be better to be in a warmer climate.
I had an MRI a couple of weeks ago of the abdomen for yearly cancer check.. The radiologist had reported a lesion so I was waiting for the Oncologist to call me with the diagnosis of this.. no call. No call. Finally I contacted the head of Radiology and she explained the reading to me that it was considered a cyst because of there being no blood flow. Then why did the radiologist document it as a LESION? A LESION is what we relate to a malignancy. I know this personally! So the Missouri University is going to work on the wording she tells me. I was upset for two days and worrying needlessly.
At least that was “GOOD” NEWS.
BUT then today my dermatologist found a pre-cancer to freeze off on my check bone (right).. so it’s always SOMETHING!
WEAR YOUR SUNSCREEN everyone!
And a hat and cover up.
It’s not beautiful to tan your skin, it’s deadly!
But all in all, it was a good day in that I don’t have to worry about CANCER in my abdomen and my Dr’s are approving of a ROLLATOR. So we need to look at the positive …Because there will ALWAYS be negative right?
Darlia

So now the Dr./Neurologist has referred to my disease as Polyneuropathy. So I looked it up.. It says..Polyneuropathy (poly- + neuro- + -pathy) is damage or disease affecting peripheral nerves (peripheral neuropathy) in roughly the same areas on both sides of the body, featuring weakness, numbness, and burning pain.

Hi Darlia, here is one of the more easier to understand explanations of polyneuropathy (actually of neuropathy in general) by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

John

Now neurologist is referring me to Neurologist in Rochester, Mayo. I will proceed to give it a shot but I don’t know when yet. Waiting…
Darlia

Hello, I just ran across this site after I started to research my husband’s medical records to work on his disability. He also has the FGFR3 antibody. He had cisplatin for squamous cell throat cancer and now has Chemo-Induced Peripheral Neuropathy, Radiation-Induced Peripheral Neuropathy and Radiation-Induced Brachial Plexopathy which is progressing to his lower extremities and worsening over time. We live in St Louis and that’s where he got tested for it.

@lauries

Hello, I just ran across this site after I started to research my husband’s medical records to work on his disability. He also has the FGFR3 antibody. He had cisplatin for squamous cell throat cancer and now has Chemo-Induced Peripheral Neuropathy, Radiation-Induced Peripheral Neuropathy and Radiation-Induced Brachial Plexopathy which is progressing to his lower extremities and worsening over time. We live in St Louis and that’s where he got tested for it.

Jump to this post

Hello @lauries, welcome to Connect. We are glad you found us. It’s a good place to ask questions and learn what others with similar health concerns are doing for treatments. I’m tagging @darlia who started the FGFR3 discussion in her search for information to see if she has some additional suggestions or information.

@lauries have the doctors suggested or started any treatments for your husband?

A good tool for learning more about FGFR3 is Google Scholar (https://scholar.google.com/). I did a search for FGFR3 – here are the results:
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=FGFR3&btnG=

John

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