Connect
← Return to VGKC double negative
Discussion
Comment receiving replies
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?
Replies to "Hello @aleciarickabaugh and welcome to Mayo Clinic Connect. Thank you for joining to connect with members..."
Connect
@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