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.

@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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@kim61

Hello, I was diagnosed with small fiber poly neuropathy and have had my first treatment of IVIG therapy. The pain and burning is intensified even more than before. This disease has affected my whole life in many ways. I can't find much info on it. Does anyone else deal with this?

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@kim61, Join the Neuropathy group on Connect.

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@kim61

Hello, I was diagnosed with small fiber poly neuropathy and have had my first treatment of IVIG therapy. The pain and burning is intensified even more than before. This disease has affected my whole life in many ways. I can't find much info on it. Does anyone else deal with this?

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Hello @kim61, I would like to add my welcome to Connect along with @steeldove and other members. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion on the same topic where you can meet other members discussing the FGFR3 antibody gene. I think this may be the discussion @steeldove mentioned.

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

Did your doctor mention how long it might take before the IVIG therapy provides any relief?

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Hello, I was diagnosed with small fiber poly neuropathy and have had my first treatment of IVIG therapy. The pain and burning is intensified even more than before. This disease has affected my whole life in many ways. I can't find much info on it. Does anyone else deal with this?

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@kim61

Hello, I was diagnosed with small fiber poly neuropathy and have had my first treatment of IVIG therapy. The pain and burning is intensified even more than before. This disease has affected my whole life in many ways. I can't find much info on it. Does anyone else deal with this?

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Hi, @kim61 - since you were talking about FGFR3 antibody causing severe small fiber neuropathy, I've moved your post here to a discussion on FGFR3 antibody in the Connect Neuropathy group.

I'd like to tag @darlia @johnbishop @jenna12 @stevetolnai who've been involved in this discussion to talk with you about the pain and burning that have been intensified since the IVIG therapy, as well as how this disease has affected your whole life.

How have you been lately? Do you have another IVIG treatment coming up?

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@kim61

Hello, I was diagnosed with small fiber poly neuropathy and have had my first treatment of IVIG therapy. The pain and burning is intensified even more than before. This disease has affected my whole life in many ways. I can't find much info on it. Does anyone else deal with this?

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Hi @kim61 -- You mentioned that you've had your first IVIG therapy treatment but the pain and burning have intensified. Did your doctor say anything about how long it might take the treatments to start helping with the pain?

There is also another discussion here on Connect that you might be interested in reading through that discusses IVIG infusion treatments. @arcticmark, @azza1 and @maryy may be able to share their experience with you on IVIG infusions.

> Groups > Neuropathy > IVIG Infusions
-- https://connect.mayoclinic.org/discussion/ivig-infusions/

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