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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)

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@darlia

As a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which is the CAUSE of my peripheral neuropathy now I am told.
Also have Gastroparesis because of this ANTIBODY. Neurotically my stomach nerves don't work properly and it takes my stomach 5-6 x longer to digest
I posted a post titled FGFR3 ANTIBODY, for those interested, please go there and leave me your comments.
Just knowing the CAUSE now starts to feel a little better.

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Replies to "As a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which..."

Hi @darlia,
Welcome to Connect. I moved your message to this discussion thread in the newly formed Neuropathy group so that you can meet other members who are living with and talking about various types of neuropathy. Thank you also for posting a separate discussion about FGFR3 antibody causing peripheral neuropathy. For those interested, please see Darlia's post here:

- FGFR3 ANTIBODY https://connect.mayoclinic.org/discussion/fgfr3-antibody/

Thank you @colleenyoung. I am looking for answers to fight this without using the recommendation of my neurologist to be treated with IV Solumedrol steroids for what he claims will slow the progression. He claims that then after 2 years, I will start to notice some either improvement or at least the slowing of the disease. Am only 58 yrs old and I started having the numbness in my left calf on the outside of my leg when it began. It started as just a small area about the size of a quarter. It was the strangest thing because it was just numb all of a sudden. That was in 2011. Now there's numbness in both heels and parts of my feet and toes. I've started having more tingling in my fingers and hands lately and two weeks ago started occupational therapy for the fact that I'm always dropping things.
I used to be on 900 mg of gabapentin 3 x a day! I told my neurologist that I wanted to wean off of it because since I'd started it 2 1/2 yrs prior, it had contributed to 40 lb weight gain which I want to lose and I didn't want to be on so much medication. I have fibromyalgia too and it did help with that pain so I kept taking it. I had asked my Dr if I would have to be on it for the rest of life and he had made it sound like I had no choice! He says "this is your new norm!".
So I've been off of it now for a week and I am hoping to our find something natural for pain. The neuropathy is only the numbness and tingling, but the pain from Fibro, Osteoarthritis and oh forgot to mention, pelvic floor disfuntion.
So my main mission is to fight, but also in my journey if it helps others to fight too, that will be a good thing.
I am thankful to find this Mayo Clinic Connect for whatever help is out there by sharing of information. Thank you to you and the other mentors. May God bless you!
<3 Darlia

Diabetes???

For anyone diagnosed as idiopathic Neuropathy. Have your Dr test for the FGFR3 ANTIBODY. This is supposedly the cause of many people's Peripheral Neuropathy but wont know it until it's tested. Blood test

If you have this antibody is there a treatment for the PN ?

@darla, can you explain more about this. I am getting tested for Gastroparesis in Thursday, but having bowel issues too. I have not been well for a while.