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.

Darlia | @darlia | Feb 28, 2018
In reply to @stevetolnai "I was told find my neurologist that chemotherapy was the only solution Ritokimab or cyclophosphamide The..." + (show)
@stevetolnai

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

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B cells? And chemo? I haven't had any discussions like that. I was told Immunotherapy or solumedrol steroids by IV. I can't do either.
Darlia

REPLY
stevetolnai | @stevetolnai | Mar 1, 2018
In reply to @stevetolnai "I was told find my neurologist that chemotherapy was the only solution Ritokimab or cyclophosphamide The..." + (show)
@stevetolnai

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

Jump to this post

Yes HE said that was the only known solution to this at the moment. which is why I started looking into other things and thankfully found you here!

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stevetolnai | @stevetolnai | Mar 1, 2018

I am actually considering going back to mayo for a second time. Although the first time 8 years ago they had no idea what was wrong. Just it was idiopathic. The doc at that time sent me packing. Left me with a bad taste in my mouth for sure. One bad apple...

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1 reply
Darlia | @darlia | Mar 2, 2018
In reply to @stevetolnai "I was told find my neurologist that chemotherapy was the only solution Ritokimab or cyclophosphamide The..." + (show)
@stevetolnai

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

Jump to this post

Where are your Dr's located? Just to be sure I understand... Are you sure you were told that your blood/lab test show that you have the FGFR3 ANTIBODY at a high number? I've never been told I have high amt of B cells or need chemo or bone marrow treatments. What you are describing don't sound like anything neurological. The referral from my neurologist to a specific Peripheral Neurological neurologist @Mayo is for the Rochester locale only! He specified her...and my understanding is that you must have a referral to be seen. I've been told b @johnbishop that they've made lots of breakthroughs with neuropathy..so we'll see!
Just do the best we can!
Darlia

REPLY
Darlia | @darlia | Mar 2, 2018
In reply to @stevetolnai "I am actually considering going back to mayo for a second time. Although the first time..." + (show)
@stevetolnai

I am actually considering going back to mayo for a second time. Although the first time 8 years ago they had no idea what was wrong. Just it was idiopathic. The doc at that time sent me packing. Left me with a bad taste in my mouth for sure. One bad apple...

Jump to this post

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.

REPLY
1 reply
Darlia | @darlia | Mar 2, 2018
In reply to @darlia "Wow!. this is very helpful info too. Thank you!. I personally have had many MRI's and..." + (show)
@darlia

Wow!. this is very helpful info too. Thank you!. I personally have had many MRI's and always wondered how the contrast could or would affect me. This is outrageous because it is obviously too late once you've already used it and I for one, I had asked the medical personnel if the contrast was going to affect me in any adverse way. Of course they had responded with that there was no reason for concern... just drink lots of water they say to 'flush' it out of your system. Same when you get a CAT.. I have had lots of contrast in the past. Now I wonder if this has been a contributing factor. Also, I read the link to the more detailed info on Peripheral Neuropathy and will share it here as well.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
Darlia

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Reposting my post for refreshing to anyone new to read this link plus adding this one too..
https://www.foundationforpn.org

REPLY
stevetolnai | @stevetolnai | Mar 2, 2018
In reply to @stevetolnai "I was told find my neurologist that chemotherapy was the only solution Ritokimab or cyclophosphamide The..." + (show)
@stevetolnai

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

Jump to this post

I am at 4000 on the FGFR3
Doc is in phoenix

REPLY
stevetolnai | @stevetolnai | Mar 2, 2018
In reply to @stevetolnai "I was told find my neurologist that chemotherapy was the only solution Ritokimab or cyclophosphamide The..." + (show)
@stevetolnai

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

Jump to this post

So for further clarification… About eight years ago I was diagnosed with autoimmune disease with perphial neuropathy
Until just recently I have found out that I have had this FGFR3 antibody at 4000
Now the issue has gone beyond my legs and feet and I have a bilaterally in both of my hands and my whole right arm is feeling numb and very Weak.
I am trying desperately to find a solution to this is my career is in muscle and rehabilitation therapy and I need both my arms and legs for the job that I do.
I hope that helps?

REPLY
Darlia | @darlia | Mar 3, 2018
In reply to @stevetolnai "I was told find my neurologist that chemotherapy was the only solution Ritokimab or cyclophosphamide The..." + (show)
@stevetolnai

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

Jump to this post

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?//

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4, 2018
In reply to @stevetolnai "I was told find my neurologist that chemotherapy was the only solution Ritokimab or cyclophosphamide The..." + (show)
@stevetolnai

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

Jump to this post

@stevetolnai and @darlia,
I'm just catching up with your conversation about docs and Mayo Clinic locations, and thought I'd offer a couple of clarifications to help answer questions. Strictly speaking one does not need a doctor referral to request an appointment at Mayo Clinic. You can self-refer. However, getting a doctor's referral can be helpful as they can provide all the necessary diagnostic details and you don't have to be the go-between. Specialists at Mayo Clinic work in co-operative, multi-disciplinary teams across all 3 campuses, meaning that if you see a neurologist at the Arizona campus your team can and will consult with neurologists in Minnesota and Florida when necessary.

For the specific neurologist that Darlia has been referred to, you may need a doctor's referral if this is what she was told. I can't confirm. But in general, you can self-refer.

Steve, was your last visit to Mayo Clinic in Arizona?

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