VGKC double negative

Hello @aleciarickabaugh and welcome to Mayo Clinic Connect. Thank you for joining to connect with members who may be able to share their experience.

I did find this research article in the event that you haven't read this and in case it may be of help.
- A Patient with Double-Negative VGKC, Peripheral Nerve Hyperexcitability, and Central Nervous System Symptoms: A Postinfectious Autoimmune Disease:
https://www.researchgate.net/publication/343315524_A_Patient_with_Double-Negative_VGKC_Peripheral_Nerve_Hyperexcitability_and_Central_Nervous_System_Symptoms_A_Postinfectious_Autoimmune_Disease
Can I start by asking if you have been found to have this antibody and, if so, what symptoms presented prior to your finding out?

@amandajro yes i have this antibody. I tested positive in February i think. Im not sure but i think my symptoms started in 2017 when i was havjng gynecological issues and needed a hysterectomy. I had developed a cyst in my breast at the time as multiple ovarian cysts. I had extreme fatigue, food changed how it tasted, had to force myself to eat, was nauseated but never vomited. Lost about 40lbs until i leveled out and started to gain it back. After surgery i felt ok for a few months and then started with hand stiffness in the mornings and then both hands and feet had started to feel tingly and didn't go away. And it has progressed significantly. I had carpal tunnel surgery to alleviate anymore nerve damage but no symptom relief. Do you have this antibody also.? I have not seen that study. Thank you. I haven't been able to find much on the Negative VGK

Hello, I just tested positive for Double Negative VGKC. I am currently dealing with ulnar neuropathy, carpal tunnel, and intercostal neuralgia. It definitely seems to be progressing. Up until my positive test, the doctors continually told me they could not find a cause. They don’t think it is a tumor, so I am hoping to try IVIG therapy to see if it helps. Have you tried any treatments?

Hello @boscott and welcome to Mayo Clinic Connect. It looks like you may be trying to connect with @aleciarickabaugh who last commented. A helpful tip is to use the @mention option and/or use the REPLY button below the comment you wish to respond to. This will allow for that member to get a notification specifically that you replied or mentioned them.

Have you discussed IVIG with your doctor?

Not yet. He just told me I was positive and left it at that. I am trying to get back in to see him or another doctor to try to figure out what to do.

@amandajro we have connected and discussed our antibodies and symptoms.