Case Report. Voltage gated potassium channels ANA-dysautonomia-IVIG

Zebra

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This is great news. Did your doctor also order tests for VGKC and VGCC autoantibodies?
Hi, @Gingergrrl

I appreciate you asking. I have read through many of your older postings on PR and your symptoms, medical findings, and experience with certain specialists is very similar to mine. (Well, except for MCAS. I have been spared from that!)

I have been tested for the VGCC antibodies several times between 2015 and 2018. All blood testing was done at the Mayo Clinic and those particular antibodies always come back negative.

The main VGKC antibody has been negative as well.

Early this year I had an appointment with a *fourth* neuromuscular specialist. This one refused to repeat the 3 VGCC antibody tests associated with LEMS, but she did perform a repetitive stimulation test, which she said was perfectly normal.

I've seen the NCS/EMG results, and they don't look perfectly normal to me, so I'm going to have my local neurologist look them over. I want to make sure we definitively rule out a LEMS or Myasthenia Gravis diagnosis before moving on.
 

Zebra

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I am trying to keep my expectations very low, but if something does come back positive, I will report back here.
Well, I utterly FAILED to keep my expectations low, and all three antibodies (LGI-1, CASPR2, and DPPX) all came back negative.

I am deeply disappointed, but too physically, mentally, and emotionally exhausted to emote.

I only had my serum tested at Quest Diagnostics. If my local neuro is open to doing a spinal tap to check my CSF for antibodies, I will pursue that this summer. My understanding is that the more comprehensive Mayo Clinic Autoimmune Encephalopathy (ENS2) Panel is supposed to be run on serum and CSF simultaneously.

https://www.mayocliniclabs.com/test-catalog/Overview/92116
 

Gingergrrl

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If one has voltage gated potassium channel antibodies, would it help to supplement with potassium?
I want to first state that do not know the answer but when I first tested positive for the voltage gated calcium channel antibodies, I asked a Neuro the same question (except re: calcium not potassium). That Neuro told me that taking calcium would not hurt but probably would not help b/c the issue was not with the calcium molecule vs. the ion channel. I am probably not remembering it all correctly since this was back in 2016.

I have been tested for the VGCC antibodies several times between 2015 and 2018. All blood testing was done at the Mayo Clinic and those particular antibodies always come back negative. The main VGKC antibody has been negative as well.
If you ran these tests several times with Mayo, I would assume that the results are correct and you are negative for the autoantibodies.

I've seen the NCS/EMG results, and they don't look perfectly normal to me, so I'm going to have my local neurologist look them over. I want to make sure we definitively rule out a LEMS or Myasthenia Gravis diagnosis before moving on.
Do you remember what the NCS/EMG results said that appeared abnormal? What symptoms do you have that might indicate LEMS or MG? (and as always I apologize if you have already explained this a million times)! My neuromuscular testing (prior to any treatment) showed that my left phrenic nerve to my diaphragm was only working at 57% of normal.

Well, I utterly FAILED to keep my expectations low, and all three antibodies (LGI-1, CASPR2, and DPPX) all came back negative. I am deeply disappointed, but too physically, mentally, and emotionally exhausted to emote.
If you are testing negative for all of these autoantibodies then this is good news and means that you can eliminate several causes of autoimmunity or paraneoplastic syndromes. But on the flip-side, I do understand how it felt to finally get some answers re: what was wrong with me and a plan for treatment.