Question about VGKC antibody

[Scaredlin]

I know this discussion was recently addressed, but not sure if the question was answered. If you have the VGKC antibody test should the result be zero? For example on the Athena scale, Negative is under 450. Mine was was 120. I was reading an article about how symptoms can occur at lower levels, from 100-400. Didn't know if anyone had a similar result or answer from their doctor. Also could you still have this with a clean EMG?

Thanks!

[leaflea]

ScaredIn

Good question. I am preoccupied with this question as well. I had 0.01 last year from Mayo clinic, significant is 0.02 in that lab, so I'm only halfway there. My neuro said it is negative. I have a hard time getting this out of my mind since the other 10 or so levels on the panel were absolutely ZERO. And, I seem to know more about acquired neuromyotonia than my doctor. This level, converted to the 100-400 scale you reference would be 10. Another scale I have seen, which probably corresponds to this number I have is 0-31 negative, 32-84 (or something like that) is to test again in 2-4 weeks, 84+ is positive. I don't understand why they use different scales....Surely wish there were more knowlegable folks out there. I think if you got 120 it warrants a retest. I looked at the Hart study, and it isn't clear if those who had a significant comorbid diagnosis all had positive VGKC but I DO think they all had positive EMMG findings. My first V was last year. I had the test repeated a few weeks ago and haven't heard my results yet. This year, my neurologist was more interested in something under the Isaac's umbrella because he'd had a patient who had been "diagnosed with psychosomatic illness for a couple years before Isaac's was diagnosed." He said if my VGKC is positive, he will want to "stick a needle" in my areas of stiffness, namely ankles and neck.

ScaredIn, if I remember, you are late 40's? So is German2 and Bibi is in this range. I recently started having hot flashes. Had a hysterectomy, so I don't know what is going on in that department. But, the hot flashes and sweating have been INTENSE the past month. I thought I must be starting my "change." Had hormone levels drawn which indicate I'm done. So, now I have a couple thoughts...bfs probably coincided with peri-menopause. and why in the world would hot flashes start NOW? I remember some very mild ones about 6-9 months ago that were kind of amusing and dismissable, not any more! I'll be 49 next month.

[Yuliasir]

As a medical translator, I always have to translate in the IFUs to immunoassays a sentence saying: "As in any other in vitro diagnostics, the lab MUST determine its own reference range".
For immunoassays, to which your test belongs, the lab really should determine its own ref diapason first, that is why each lab has its own figures, and if they mark that as negative, you should take that.

[leaflea]

Way over my head, but thank you so much for your wisdom I'll report my latest result when I hear. In the meantime sweat and stiff. You're the best.

[Scaredlin]

Yes, 47. And the weirdness continues. I really wish it were just twitching. Lot of cramping - lower body, even throat. Weight loss, some muscle atrophy and a lot of autonomic symptoms, i.e, TMI, my bowels have stopped working too. My periods are erratic, and Im missing months, but I don't think thats all thats going on. Lots of burning, aching etc but not something peripheral with me or it would have shown on EMG, its got to be central, which is very scary. Im going to an autonomic neurologist in March. Its been 2.5 yrs for me and has worsened so I really can't say Im stable like most on this board. Definitely feel something going on but Im no longer worried about A**..

[leaflea]

Scared in. Keep us posted. I have much more than twitching also with autonomic sx. Estrogen affects CNS. So it makes some sense. Internist at mayo suspected limited scleroderma or crest syndrome. It's close but doesn't totally fit. Or, ehlers-danlos. I'm somewhere between I think. To some degree many of these issues may have been there before but exacerbated cry peri-meopause and totally exaggerated some weird symptoms. Ask for estrogen and fsh levels.

[Scaredlin]

Leaflea-
Funny you mentioned Ehlor Danlos. I am hypermobile and have a lot of connective tissue issues - mitral valve prolapse that needed open heart surgery, crazy disc herniations in my neck with no previous injuries, longish face, high arched palate, etc etc etc. I always wondered if I fit that profile.

I have anticardiolipin antibodies and low serum complement levels so I wonder if mine has an autoimmune origin but so far no one has committed to that.

Thank you for your encouraging support. Do you have kids? I have three and Im scared to death b/c two of them are very young (5 and 7). I just need someone to tie this together. And now sometimes I have urinary issues, Im like, well there goes another autonomic thing. I already had Tilt test (negative) and sweat test which shows reduced sweat glands.

[Little Lost]

Leaflea

All antibody tests have non specific binding. So really low values don't mean you have any of the VGKC antibodies present, all that is showing up is just the background of nonspecific artifacts expected on the test. Usually a bit of cell debri binding to the probe and making it fluoresce. Every test has ref values for non specific binding. No probe is 100% pure for detecting any marker.

Scardlin
Like me you have 3 kids and anticardiolipin antibodies. They never endangered my pregnancies but I was monitored a lot. Do you have lupus?. Also which complement levels were low. They are all very different and involved in different immune cascades ? Being low in C1 is a very different thing than having low C2b or C3.

Hx

[Scaredlin]

Leaflea-
Hi! Yes, anticardiolipin but they rise and fall.

Question what did you mean about C1 being difft than C2b or C3. I am low on C1Q and one of my C3s or C4s are always out of range or both chronically low. No, never formally diagnosed with lupus.

Three kids and still worrying. Lots of symptoms again.

[leaflea]

ScaredIn

I have 2 kids, 17 and almost 21. I don't want to go into all my autonomic sx, but right now, hypersalivation. It is no joke. Many docs have suspected auto-immune, but negative ANA and 1 sedation rate. I get cold hands and feet, but no discoloration so don't know if it is Raynaud's or not. I don't really fit any dx, but have a collection of things that fit many, though none fully. Right now, I'm blaming stress, menopause, minocycline, post allergy, asthma inhaler...So stinks!

I haven't seen my paraneoplastic panel with my own eyes, but the doctor's assistant called and said everything was absolutely ZERO of 9 different values. So, this is great news of course! However, she couldn't see the "VGKC" exact letters, so I'm not even positive it was included. I'm going to look at the results with my own eyes this week (I work in the building) and see if I can make any sense - if anything looks familiar. If I don't have certainty, I'll ask the neuro to explain. He is obviously too busy to call me himself.

Hang in there!

And Little Lost, THANK YOU for chiming in. Your input,insight, and intelligence is so very valuable! XX

[leaflea]

Just posting this little quote I found here while searching for a connection between menopause and the GLAUCOMA I've been told this week I am a suspect:

The mechanism of estrogen’s protective effect remains unclear, but most of the evidence suggests that it may be neuroprotective"

Explains a lot for us 40-50 year old ladies!

[leaflea]

Just saw the result for myself with my own failing eyes for the first time. VGKC is zero. Whew. Wanted to be sure it stayed the same or went down rather than up since I had it tested last year and it was slightly elevated. I know you all were waiting with bated breath AND my eGFR has gone from 59 to 87. I have no idea how or why or why it was low to begin with, but I'm relieved and will take it. So many strange, strange things.