FGFR3 ANTIBODY

Posted by Darlia @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.

@lisalucier

Hi, @kim61 – since you were talking about FGFR3 antibody causing severe small fiber neuropathy, I've moved your post here to a discussion on FGFR3 antibody in the Connect Neuropathy group.

I'd like to tag @darlia @johnbishop @jenna12 @stevetolnai who've been involved in this discussion to talk with you about the pain and burning that have been intensified since the IVIG therapy, as well as how this disease has affected your whole life.

How have you been lately? Do you have another IVIG treatment coming up?

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Hi Lisa Lucier, I do not have small fiber neuropathy, that I have been told. However, I do have Peripheral Neuropathy that is autoimmune caused by the FGFR3 antibody. I also have not ever had IVIG therapy. Darlia

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@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

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I see this is an old thread, but the question asked alerted me to two things found on my blood word, Borderline B-12 (for which I am now taking B-12, 3000 mcg, sublingual), and an elevated anti-HDS which is actually associated with atonal sensory neuropathies. The sensory neuropathy has been my operating diagnosis. I could not find any info on-line about possible treatment for the elevated anti-HSD. Is there any information you have on this? Thanks.

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@memomsloan

I see this is an old thread, but the question asked alerted me to two things found on my blood word, Borderline B-12 (for which I am now taking B-12, 3000 mcg, sublingual), and an elevated anti-HDS which is actually associated with atonal sensory neuropathies. The sensory neuropathy has been my operating diagnosis. I could not find any info on-line about possible treatment for the elevated anti-HSD. Is there any information you have on this? Thanks.

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@memomsloan, what is an elevated anti-HSD? Did you mean an elevated anti-HDS? I did find some information but not really sure it is helpful. Did your doctor/neurologist give you any suggestions for treatment?

Prevalence of Axonal Sensory Neuropathy With IgM Binding to Trisulfated Heparin Disaccharide in Patients With Fibromyalgia.
https://www.ncbi.nlm.nih.gov/pubmed/30801480

Several Atypical Presentations of TS-HDS Associated Neuropathies
https://n.neurology.org/content/86/16_Supplement/P6.269

Immune Neuropathies: Axonal – Neuromuscular Home Page
https://neuromuscular.wustl.edu/antibody/pnimax.html

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@johnbishop

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:
https://ghr.nlm.nih.gov/gene/FGFR3
@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

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Everyone has the gene. We look at the antibodies against the gene Igg vs FGFR3

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@darlia

Hello everyone I have some new symptoms that I want to investigate. The last couple of weeks I've been waking up with really bad pain throbbing in my wrist hands and arms lower arms. Stiffness too and the pain even when using some tumeric or Tylenol doesn't go away during the day it just gets a little bit better. Are these symptoms of peripheral neuropathy? Also it seems to be worse in my right wrist and it does seem swollen in my right wrist area on the outside of my hand.
Darlia

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Hello Darlia, I have 10000 Igg vs fgfr3 I have all symptoms you mentioned above

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@adamek3638

Hello Darlia, I have 10000 Igg vs fgfr3 I have all symptoms you mentioned above

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Hi, @adamek3638 – welcome to Mayo Clinic Connect. You mentioned you have symptoms similar to @darlia. Will you share more about what you are experiencing?

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Hi @darlia, I have the elevated FGFR3 antibody also. My neurologist sent my blood to St Louis also and this was the diagnosis. I have had severe peripheral neuropathy in my feet for a few years which they thought was related to diabetes but apparently it is not oh, it has been uncontrolled for at least 2 years now and create so much pain for me but I had to stop working as a nurse due to all of the medications I have to take to help me get through each day. I also get very sharp nerve pain in other places like my hands my fingers my thighs my ankles just wherever it decides to hit can get. I started IVIG therapy for months ago and I think that it's helping a little bit but I am suffering quite a few side effects so we will see how things go. I will always available to talk to if you want to talk more about our symptoms and see how they compare. Take care, Kim

Liked by Lisa Lucier

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@kim61

Hi @darlia, I have the elevated FGFR3 antibody also. My neurologist sent my blood to St Louis also and this was the diagnosis. I have had severe peripheral neuropathy in my feet for a few years which they thought was related to diabetes but apparently it is not oh, it has been uncontrolled for at least 2 years now and create so much pain for me but I had to stop working as a nurse due to all of the medications I have to take to help me get through each day. I also get very sharp nerve pain in other places like my hands my fingers my thighs my ankles just wherever it decides to hit can get. I started IVIG therapy for months ago and I think that it's helping a little bit but I am suffering quite a few side effects so we will see how things go. I will always available to talk to if you want to talk more about our symptoms and see how they compare. Take care, Kim

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Hi, @kim61 – thanks for sharing your diagnosis with elevated FGFR3 antibody and your experience with intravenous immunoglobulin therapy (IVIg).

Will you share more about what side effects you are having from the treatment?

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@lisalucier

Hi, @adamek3638 – welcome to Mayo Clinic Connect. You mentioned you have symptoms similar to @darlia. Will you share more about what you are experiencing?

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hot sensation in my legs like 'burning' numbness, weakness. Inability to sweat – thus impaired thermoregulation. Constantly dry skin.

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@adamek3638

hot sensation in my legs like 'burning' numbness, weakness. Inability to sweat – thus impaired thermoregulation. Constantly dry skin.

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Hi @adamek3638, I would like to add my welcome to Connect along with @lisalucier and other members. Have you been diagnosed for the inability to sweat symptom or found anything that helps? Mayo Clinic has some information on the condition here:

Anhidrosis – Symptoms & Causes:
https://www.mayoclinic.org/diseases-conditions/anhidrosis/symptoms-causes/syc-20369400?page=0&citems=10

Liked by Lisa Lucier

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@johnbishop

Hi @adamek3638, I would like to add my welcome to Connect along with @lisalucier and other members. Have you been diagnosed for the inability to sweat symptom or found anything that helps? Mayo Clinic has some information on the condition here:

Anhidrosis – Symptoms & Causes:
https://www.mayoclinic.org/diseases-conditions/anhidrosis/symptoms-causes/syc-20369400?page=0&citems=10

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I haven't been diagnosed with inability to sweat. I was positive for Igg vs FGFR3 antibody. I noticed constantly dry hands, no sweat at all. And I noticed buldging veins – especially in my apartment, where they were testing 5g. This technology is a killer for people with small fibers neuropathy.

ECEAA698-C034-4BDC-BCC0-AFFE47826B8D

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@lisalucier

Hi, @kim61 – thanks for sharing your diagnosis with elevated FGFR3 antibody and your experience with intravenous immunoglobulin therapy (IVIg).

Will you share more about what side effects you are having from the treatment?

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Hello @lisalucier, yes I would be glad to discuss my side effects with IVIG treatment. The first three months I basically had headaches for two or three days during and after the infusion. After my last infusion which is my fourth one, I've been feeling much worse until today and I am 1 week and 1 Day post infusion today I have very dry skin, I have developed blisters on my face that have a very clear fluid inside of them that pop and turn into scabs, I have been feeling very tired and sick to my stomach with a lot of bloating and belching. But on the upside of things I do get moments a very little pain for the first time in years. I do get a lot of zingers which are like electrical shock stabbing me in different places all around on my body particularly in my lower extremities but also in my hands. I put a call in to the neurologist office to see if maybe there can be some additional assistance with managing the side effects because I don't want to stop the treatments but I don't like how this is making me feel.

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@kim61

Hello @lisalucier, yes I would be glad to discuss my side effects with IVIG treatment. The first three months I basically had headaches for two or three days during and after the infusion. After my last infusion which is my fourth one, I've been feeling much worse until today and I am 1 week and 1 Day post infusion today I have very dry skin, I have developed blisters on my face that have a very clear fluid inside of them that pop and turn into scabs, I have been feeling very tired and sick to my stomach with a lot of bloating and belching. But on the upside of things I do get moments a very little pain for the first time in years. I do get a lot of zingers which are like electrical shock stabbing me in different places all around on my body particularly in my lower extremities but also in my hands. I put a call in to the neurologist office to see if maybe there can be some additional assistance with managing the side effects because I don't want to stop the treatments but I don't like how this is making me feel.

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@kim61 – Patients are put in such difficult positions having to identify and decipher between treatments and/or medications being beneficial, successful or worth it. What a grind it is.

I give you credit for persevering and trying IVIG. Thank you for the feedback on this procedure. It is helpful. The best is wished for you as you move forward.

Rachel

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Hello @rwinney , I appreciate your support.

Liked by rwinney

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@adamek3638

I haven't been diagnosed with inability to sweat. I was positive for Igg vs FGFR3 antibody. I noticed constantly dry hands, no sweat at all. And I noticed buldging veins – especially in my apartment, where they were testing 5g. This technology is a killer for people with small fibers neuropathy.

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Hi, @adamek3638 – have you gotten the opportunity to talk to your doctor about the bulging veins, no sweat and constantly dry hands? If so, are you receiving any treatment for these issues?

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