Anyone have the FGFR3 antibody gene?

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

Jump to this post

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?

Jump to this post

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.

Jump to this post

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.

Jump to this post

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.

Jump to this post

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?

Jump to this post

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

Jump to this post

Hello,
Because of the coronavirus I had to stay in Europe little bit longer. Unfortunately FGFR3 antibodies testing is not recognized here, so I cannot receive standard medical treatment. I emailed my neurologist in LA and Boston and they both told me I should receive immunoglobulins, but in Europe they give them for Guillian Barre syndrome and motor neuropathy. I'm left alone and started to look for alternative treatments. Vit C with saline water works great for me, but maybe because chronic illness seriously affected my adrenals. I was diagnosed with HPA Axis disfunction and referred to endocrinology hospital. Another thing is when your hormones don't work as they should you may develop metabolic issues and this was my case. I spoke to rehabilitation doctor and he said because my skin is so dry, dehydrated and lost fatty tissue- Im oversensitive to RF-EMF radiation and it irritates my nerves increasing neuropathic pain. I spoke to academic professor of neurology and she said small fibers neuropathy is usually symptom of underlying condition so it's worth to see what's the underlying condition first.

Jump to this post

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.

Jump to this post