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VGKC and postallergy and neuromyotonia

PostPosted: January 26th, 2016, 9:03 pm
by leaflea
Dear all,

A year ago (a little over a year into this at the time) I had a paraneoplastic blood assay done. Every single blood marker was ZERO...except one. The VGKC ab was 10. I know, I know, this is a negative result but still. Those anti-bodies were present. I haven't been able to really shake that knowledge. Having those anti-bodies at all is rare, even if it is negative.

Negative = 1-31
Borderline = 32-87
Positive = 88+

I just read this elsewhere and then found it here as well (BFSBurger 2012), that VGKC can be postive post-infection or post-allergy.

Now, it seems more than coincidental that I had a severe allergic reaction to what I think was Rosemary in a skin product (I had allergy tests for every single ingredient in the things I'd been using except Aloe and Rosemary - and I've used Aloe without problem accidentally and Rosemary and the related Tea Tree Oil with some evidence of allergy). I had angioedema. It was AWFUL!! The swelling lasted nearly a week and was purulent. In addition, during this time, I felt totally FRIED, nervous, on edge...I had never experienced anything like it as I'm usually pretty laid back. BFS started within a week or two of that episode. The allergic reaction followed a stressful life event and also the taking of minocycline. I believe this was the "perfect storm."

In addition to twitching, I've had cramping (both of these symptoms are now better by 80-90%), hyper-salivation increased sweating, stiffness especially in feet ankles and neck (these things are more common with the positive VGKC and sadly much worse at the moment) , physiologic nystagmus, tremors, hypnic jerks, tremors, vibrations, internal tremors, cold hands and feet, burning sensation in feet, hands and feet falling asleep, hyper reflexes...

I know others here had allergies or angioedema prior to BFS onset (Yuliasir) or others? Many had a virus or other infection, and others had stressful event (just read that often precededs Stiff Person Syndrome and also that SLS have exaggerated startle response - helloo).

Anyway, I write this to see about anyone else who shares this experience at all ~ negative but present or positive or borderline VCKG, bfs post allergy or infection....? Please share.

Re: VGKC and postallergy and neuromyotonia

PostPosted: January 27th, 2016, 2:36 am
by German2
Hi leflea,

nice to hearing from you! Interesting post...can you write the whole name of those antibodies so that I can find it in German pages?
I have obviously a chronic herpes zoster virus which breaks out from time to time..this is evident. A doctor of complementary medicine also found legionella and borrelia in me (would be fitting to my lung problems).
And I have strong allergies anyway since birth. My twitching got much better when I stopped eating gluten for example for there is a gluten sensivity (test based)..Anyway, I had strong infections before both of my twitching periods....

would be good to know more

Re: VGKC and postallergy and neuromyotonia

PostPosted: January 27th, 2016, 6:50 am
by Yuliasir
I had something simnilar to agnioedema lasting for 3 days but AFTER BFS onset, and after extermely sharp anxiety flareup. I got urticaria first, and then edema on my lips. Urticaria went down on antihystamine pills, the fascial edema did not.

I relate my own BFS onset of several months of stressful events in a row.

Re: VGKC and postallergy and neuromyotonia

PostPosted: January 27th, 2016, 12:08 pm
by leaflea
Hi German2, the test is for Voltage Gated Potassium Channel antibodies (VGKC). Mine were below clinical significance, but there. My binding AChR was 19%, still under clinical significance, but there. These two things tend to go together for Myasthenia Gravis, Thymoma, and less often other things. With all of the investigations you have had I would be shocked if you have not already had these done. I didn't have further testing because they were low, yet the ONLY thing at all positive -- totally negative ANA, totally negative Sedation Rate, etc. To me, it seems like something to pursue and at least have re-tested since my symptoms have changed and the things I didn't notice much before are so prominent now. Just realized I've been off the daily Magnesium for about a month since the stiffness started getting bad. Will add that back right away. God Bless Everyone.