Anyone have the FGFR3 antibody gene?

It burns virtually all of your extra calories 🙂

My PN is similar to your symptoms. Let me know if you start taking this and if it really helps eliminate the numbness? Does anyone know if electronic therapy or laser therapy works?

Very cute!!

Hi Darlia
I was recently diagnosed with the same. After years of not knowing what was wrong with me now finding out it seems like we are a very small group? i'm looking for answers myself regarding this. Thank you for posting looking forward to both of us finding some answers and hopefully getting better. I wish you all the best of health and blessings!

I was told find my neurologist that chemotherapy was the only solution
Ritokimab or cyclophosphamide
The first is the smart bombed that targets only be cells. It's supposed to kill the B cells and stop progression of this. The second is a nuclear bomb that targets bone marrow
The smart bomb is done one time every three months for 12 to 15 months so I'm told
I haven't done anything as of yet as I just found out this past week.
I'm hoping to find an alternative

Shalom!~Hey~Greetings!~Good morning~
I decided to post an update to my personal search for help with this disease...
I had scheduled an appointment with the Mayo in Rochester for the end of March as my Neurologist sent a referral to them for me to go since no specialist in MO that my insurance will allow can help me.
Plus, Mayo will have the most up-to-date technologies and solutions for this neuropathy.
But, they told me to prepare to stay for at least 7-10 bus days. Well, we live on a fixed income of my husband's pension and SS and I do not work. So to go and stay there in Rochester for extended stay isn't going to happen for us until we can save for it.
So, I'm looking at moving it far out probably into the Fall!.
This question is for the moderator or mentor... Do you know of a way through Mayo to get donations to come for a visit? Is there any suggestion on how raising the funds for this? Thanks.
Darlia

Hello Darlia (@darlia) - Mayo Clinic does have a financial assistance program and you might want contact them. There is more information on their website here:

Charitable Care and Financial Assistance at Mayo Clinic
-- https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

John

Hi @darlia, the link to Charitable Care the John provided was the link I was going to post.

Thank you to @johnbishop and @colleenyoung!! I will definitely check it out. I have insurance though... In in the process of getting my Dr. To fill out the paperwork and write a letter to explain why I need Mayo vs any other medical facility in MO to get Mayo covered as IN NETWORK. Have to prove that it's necessary over another 'in state provider.' It's the travel and stay time that we would have to raise the funds for.
Darlia

Hi @stevetolnai .. It's an interesting issue isn't it .. to find out .to be told you have a "rare" antibody . And that there is "no cure" and that it's "going to progress and can't be reversed" .. and to be told all of this on the same visit! Sheesh!
I apologize for the delay. . I hadn't read your post till now.
I'll keep posting as any changes happen. You should do the same. We can support all of us out here that have this crazy thing.
I say anything that can help that is more natural than synthetic meds, I'm all for. I just went to one of my 3 Neurologists on Friday and he tried to talk me into 3-4 different meds. I didn't bite on any of them!!
Then he admitted...they help the symptoms . But DONT get to the ROOT of the problem! So for now, I am Not taking anything for Neuropathy.(drinking Super Foods cocoa flavored) Does that count?
Just keep swimming
Darlia