FGFR3 ANTIBODY

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.

@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

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@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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I am at 4000 on the FGFR3
Doc is in phoenix

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@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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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?

Liked by Darlia

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@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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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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@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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@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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@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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The neurologist I see for the Peripheral Neuropathy referred me to a specific mayo neurologist because he said she is top notch for peripheral neuropathy. Then their office called me to make the appt.

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@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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He also said that Rochester I a the best!

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Hello everyone I have some new symptoms that I want to investigate. The last couple of weeks I've been waking up with really bad pain throbbing in my wrist hands and arms lower arms. Stiffness too and the pain even when using some tumeric or Tylenol doesn't go away during the day it just gets a little bit better. Are these symptoms of peripheral neuropathy? Also it seems to be worse in my right wrist and it does seem swollen in my right wrist area on the outside of my hand.
Darlia

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@darlia

Hello everyone I have some new symptoms that I want to investigate. The last couple of weeks I've been waking up with really bad pain throbbing in my wrist hands and arms lower arms. Stiffness too and the pain even when using some tumeric or Tylenol doesn't go away during the day it just gets a little bit better. Are these symptoms of peripheral neuropathy? Also it seems to be worse in my right wrist and it does seem swollen in my right wrist area on the outside of my hand.
Darlia

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Hi Darlia, I have neuropathy in my hands, feet and legs up to my knees from too much strong chemo therapy. My husband also has peripheral neuropathy of his feet. Neither of our symptoms sound like yours. If it were me, I would go to a good doctor and get properly diagnosed. Take it from me, don’t mess around with your health. It is the most important thing that we possess. I didn’t listen to my body and it almost cost me my life. I wish you luck and hope that you get your health problem figured out. Good luck to you and take care.

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@darlia

Hello everyone I have some new symptoms that I want to investigate. The last couple of weeks I've been waking up with really bad pain throbbing in my wrist hands and arms lower arms. Stiffness too and the pain even when using some tumeric or Tylenol doesn't go away during the day it just gets a little bit better. Are these symptoms of peripheral neuropathy? Also it seems to be worse in my right wrist and it does seem swollen in my right wrist area on the outside of my hand.
Darlia

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@jenna12..Hi Jenna-If you look at the publisher of this thread you will see that it is me. I'm simply mentioning some new symptoms. I also have Fibromyalgia and osteoarthritis. My suspicion is that these new symptoms are a combination of these two, however, since I also have the PN in my hands and arms, figured it should be ok to ask if others have these symptoms too. Thanks for the concern.
Darlia

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