1. < Neuropathy

Anyone have the FGFR3 antibody gene?

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Kathy84 | @adamek3638 | May 19, 2020
In reply to @darlia "Hi John, Thank you for the concerning note. I'm still here! We had to have a..." + (show)
@darlia

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

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So called'crawling' is typical symptom of neuropathy I've read. My friend tried SOT therapy and it helped her a lot with this so far

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Kathy84 | @adamek3638 | May 19, 2020
In reply to @jesfactsmon "Hi @adamek3638 I am interested in your comment regarding 5G's affect on SFN. I had not..." + (show)
@jesfactsmon

Hi @adamek3638 I am interested in your comment regarding 5G's affect on SFN. I had not heard this before. I searched a bit online but only found a couple of passing references to this, nothing with any real info. Can you offer a link to any webpage with some info about this? Sounds like something to be aware of. Thanks much, Hank

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712049/
Apparently this is the first study confirming RF energy triggers neuropathic pain and I couldn't agree more. I developed my neuropathy in the apartment with substation behind my wall and 5g being tested whole the time I lived there ( which I wasn't aware back then). I had pain whenever I used my phone. I couldn't work on my computer because I felt 'pins & needles' immediately. I also got red rash on my chest which was misdiagnosed as lupus and dermatomyositis initially, but I went to rheumatology hospital tested all antibodies and they came back negative.

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1 reply
Kathy84 | @adamek3638 | May 19, 2020
In reply to @rwinney "@adamek3638 Hello Kathy. Dear, dear, dear. you have alot on your plate. I'm so sorry for..." + (show)
@rwinney

@adamek3638 Hello Kathy. Dear, dear, dear. you have alot on your plate. I'm so sorry for this. Have you been diagnosed with auto immune to qualify for IVIG? If not, have your drs mentioned plasmapheresis or lidocaine infusions? I'm wondering if you've had a spinal tap or skin punch biopsy? You are definitely in a tough spot but. keep persevering and fight for what you need. I wish you all the best in sorting out and making progress. You have support from Connect! Keep up posted and I'm here to chat anytime you need. Sending positive thoughts your way. 🌈
Rachel

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I had my blood test taken in Boston in November. I received results in January while away for Christmas. I went to hospital immediately with them but no one acknowledged these results and my symptoms of autonomic dysfunction, pins and needles, rash, weakness, fatigue, dizziness, blackouts and vasovagal syncope - they took as 'psychosomatic' That's the worst thing you want to hear feeling like that. I was in rheumatology hospital but didn't qualify for IV, because my rheumatology results came negative. I self medicate with gabapentin, Vit C & saline infusion and waited for the pain to calm down. Looks like I had a flare back then, but no one was able to help me without positive tests acknowledged by medical programs.

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jeffrapp | @jeffrapp | May 19, 2020
In reply to @adamek3638 "https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712049/ Apparently this is the first study confirming RF energy triggers neuropathic pain and I couldn't..." + (show)
@adamek3638

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712049/
Apparently this is the first study confirming RF energy triggers neuropathic pain and I couldn't agree more. I developed my neuropathy in the apartment with substation behind my wall and 5g being tested whole the time I lived there ( which I wasn't aware back then). I had pain whenever I used my phone. I couldn't work on my computer because I felt 'pins & needles' immediately. I also got red rash on my chest which was misdiagnosed as lupus and dermatomyositis initially, but I went to rheumatology hospital tested all antibodies and they came back negative.

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Hi Kathy
I just read most of the paper you referenced. From my reading, I do not think it supports your claim that RF energy triggers neuropathic pain.
Most importantly, the paper was retracted. I don't know why or by whom, but that generally means either the author(s) or journal decided after it was published that it was faulty in some way.
Furthermore, the author(s) concluded that RF energy may trigger pain in amputated limbs, but not in people without an injury like amputation.
None of the above means that you're wrong in believing in this theory. It simply means that there is no scientific evidence to support it, if in fact this paper is the "first" that provides the evidence.
Hope you are doing well.

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1 reply
Kathy84 | @adamek3638 | May 19, 2020
In reply to @jeffrapp "Hi Kathy I just read most of the paper you referenced. From my reading, I do..." + (show)
@jeffrapp

Hi Kathy
I just read most of the paper you referenced. From my reading, I do not think it supports your claim that RF energy triggers neuropathic pain.
Most importantly, the paper was retracted. I don't know why or by whom, but that generally means either the author(s) or journal decided after it was published that it was faulty in some way.
Furthermore, the author(s) concluded that RF energy may trigger pain in amputated limbs, but not in people without an injury like amputation.
None of the above means that you're wrong in believing in this theory. It simply means that there is no scientific evidence to support it, if in fact this paper is the "first" that provides the evidence.
Hope you are doing well.

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The article is scientistic to start with. Because they didn't test on humans - it doesn't mean the test is not scientifically valid. No one will ever officially test on humans- because tests on humans are generally forbidden. Article is was retracted because it proves the truth telecommunication companies don't want to admit for simple reason - personal injury lawsuits. That's why we must be open minded and aware and don't assume article was retracted because it was 'faulty' It's true and not everyone likes it. Sorry my hand hurts from writting. I must take gabapentin before I take phone in my hand. RF in my apartment was 10 times above the limits and I didn't recover from all the injuries yet. Got referred to hospital 2nd time this year, plus 3 times last year. What a year

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eoglover | @eoglover | Jun 18, 2021
In reply to @darlia "interesting.. I used to live in the Valley and went to Mayo there back in 2009..." + (show)
@darlia

interesting.. I used to live in the Valley and went to Mayo there back in 2009 but for other issues at the time. My Peripheral Neuropathy wasn't diagnosed till when I was living here in NE Missouri, I think it was 2014. the finding of the FGFR3 antibody which prior to this, I'd never heard of..was done by my neurologist sending my lab out to St. Louis. my number was very high.. 14,000+..
can you tell us more about this B cell?//

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My husband just got FGFR3# 9000..Can anyone help me with what the outcome is to this number Eileen Glover

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1 reply
eoglover | @eoglover | Jun 18, 2021
In reply to @darlia "I first had numbness in my left leg out of the blue in 2011. Now progressed..." + (show)
@darlia

I first had numbness in my left leg out of the blue in 2011. Now progressed to left leg- half of the shin toward the outter area of the leg-other leg had started too but milder. On my feet my heels are totally numb in parts of them and parts of ankles and feet/toes. My pain is random burning or sharp and tingling. But not bad. Mostly the numbness. My hands have some symptoms too. Mostly tingling and warm sudden pains but very little numbness yet. But only this last yr, due to a really good neurologist, did we find this antibody. So I would say it's the same thing...I'd had 6 yrs of not having this diagnosis yet. Also I have Gastroparesis which was considered idiopathic too because I don't have diabetes. Now it's suspected that this antibody is the cause for that too as it's also neurological.

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Would you share any information on your treatment? My husband has just gotten IgG vs FGFR3 9000 diagnosis thank you. Eileen Glover

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eoglover | @eoglover | Jun 18, 2021

What treatment is used for elevated FGFR3 9000...Please share

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 18, 2021
In reply to @eoglover "My husband just got FGFR3# 9000..Can anyone help me with what the outcome is to this..." + (show)
@eoglover

My husband just got FGFR3# 9000..Can anyone help me with what the outcome is to this number Eileen Glover

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Hello Eileen @eoglover, Welcome to Connect. Thank you for helping your husband. Since the FGFR3 gene plays a part several different health conditions are you able to share a little more about your husbands diagnosis?

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eoglover | @eoglover | Jun 19, 2021

Yes, he has had PN diagnosis for 15 years or more...vague symptoms at first. No Family genetics. Was also misdiagnosed with ALS in 1995 by an MD. That was an awful journey through Christmas season. He also was for many months in the very heart of Agent Orange as part of his history in Vietnam... this past week , we got result from UF in Gainesville that had sent blood samples to St. Louis Mo.,.Washington Univ... and results came back IgG vs FGFR3 9000 <3000... We need help with any information anyone can provide for us. We live in Palm City Florida. Thank you all in advance for any help that you can provide.

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