Quest Diagnostic result? (VGCC AB)

[kisekishiawase]

This is the first time i tested on Quest Diagnostic.

Someone ever see their test result and could explain if what i have is the right result or the test is failed?

i wonder why theres no unit measurement pmol/L like in reference range? i thought 72 H is 72 hours...?

heres the photo:

i try to call but they said they cant check on it. so im confused

 

[Gingergrrl]

@kisekishiawase I was just about to reply to your PM (and I still will ) and then I saw this post. I have done endless tests with Quest and can help interpret this (but please also check w/your doctor who ordered the test).

The test is for the "N-type Calcium Channel Autoantibody" which is also referred to as "Voltage Gated Calcium Channel Autoantibody, N-type" and these two terms are inter-changeable.

They give you two columns for the results "in range" and "out of range" and your result is in the out of range column and it is flagged as "High" (and the "H" stands for "High" and NOT for "hours"). The reference range on this specific test shows that "normal" should be below 54 pmol/L but your result is 72 pmol/L.

I had to Google pmol/L (b/c I was not sure what this meant either) and it stands for "Picomoles per liter". I'm not certain what that means beyond that it is the unit of measurement that Quest is choosing to use for this specific test.

But your result is definitely abnormally high (assuming that Quest did not make a lab error). If you wanted to test for this same autoantibody with a lab that is superior to Quest, you could do it through Mayo Clinic's Lab (but I know this is VERY challenging to do outside of the United States).

Were you also tested for the P/Q type Calcium Channel Autoantibody?

Edited to Add: I just replied to your PM and please let me know if you have any other questions.

 

[kisekishiawase]

Hello again and Thank you for replying

I see..Were you other results also dont have the unit measurement(liter, milliliter, etc)?
also before they send the result they ask about my symptoms/diagnosis. is it normal?

the only top lab in my country that i know send lab test to US have partnership only with Quest as far as i know. so im in doubt if i can have the test at Mayo

What about ArupLab? is it superior to Quest? if im not mistaken theres a Lab here that send to them but last time i ask about the ion channel antibody test they cant accept.

i thought N type n p/q type is very similar?
does that mea. if i testes positive at both it increase my chance of getting the disease worse?

I also test for VGKC AB.
i only test for those two. but i read people do the autoimmune panel, neurological autoimmune panel, etc i wonder if i need that.
since im concerned about the surgery.

Thank you again for your interpretation. its really helpful cause so far i cant find anyone/doctor in my country that understand it

i will still try to search

@kisekishiawase I was just about to reply to your PM (and I still will ) and then I saw this post. I have done endless tests with Quest and can help interpret this (but please also check w/your doctor who ordered the test).

The test is for the "N-type Calcium Channel Autoantibody" which is also referred to as "Voltage Gated Calcium Channel Autoantibody, N-type" and these two terms are inter-changeable.

They give you two columns for the results "in range" and "out of range" and your result is in the out of range column and it is flagged as "High" (and the "H" stands for "High" and NOT for "hours"). The reference range on this specific test shows that "normal" should be below 54 pmol/L but your result is 72 pmol/L.

I had to Google pmol/L (b/c I was not sure what this meant either) and it stands for "Picomoles per liter". I'm not certain what that means beyond that it is the unit of measurement that Quest is choosing to use for this specific test.

But your result is definitely abnormally high (assuming that Quest did not make a lab error). If you wanted to test for this same autoantibody with a lab that is superior to Quest, you could do it through Mayo Clinic's Lab (but I know this is VERY challenging to do outside of the United States).

Were you also tested for the P/Q type Calcium Channel Autoantibody?

Edited to Add: I just replied to your PM and please let me know if you have any other questions.

 

[Zebra]

the only top lab in my country that send lab test to US have partnership only with Quest so im in doubt if i can have the test at Mayo

Hello! I wanted to let you know that Quest Diagnostics purchased a highly reputable laboratory called Athena Diagnostics. Athena specializes in neurological testing.

https://www.athenadiagnostics.com/about-us

So, if your doctor feels that confirmation antibody testing is required, they can send your blood sample to Quest, with a requisition form for Athena. (Or perhaps send directly to Athena instead.)

@Gingergrrl is our LEMS expert, so it's awesome that she still participates in this forum and generously shares her first-hand experience.

Best of luck to you in your ongoing work up!

 

[kisekishiawase]

Thank you.
i will try to pursue it.
but isnt it the same as Quest too?
1 thing i dont understand why its written the test isnt cleared&approved by FDA? and its developed by quest lab.

@Gingergrrl actually my inspiration for fighting to get the test. people here dismissed rare conditions since its rare and doctor dont know that too thats why i feel lost. since i have abnormal result its should open their eyes theyre wrong to dismiss me and mistreat me. its really hard for me to fight alone finding a way to find my disease let alone the solution

i think its better if i can have teleconsultation with doctor in US or outside my country whos experienced, knowledgeable in it.

Hello! I wanted to let you know that Quest Diagnostics purchased a highly reputable laboratory called Athena Diagnostics. Athena specializes in neurological testing.

https://www.athenadiagnostics.com/about-us

So, if your doctor feels that confirmation antibody testing is required, they can send your blood sample to Quest, with a requisition form for Athena. (Or perhaps send directly to Athena instead.)

@Gingergrrl is our LEMS expert, so it's awesome that she still participates in this forum and generously shares her first-hand experience.

Best of luck to you in your ongoing work up!

 

[Gingergrrl]

I see..Were you other results also dont have the unit measurement(liter, milliliter, etc)?

I'm not sure if I understand this question but when I do tests with Quest, they give a reference range (meaning what is considered to be the "normal" range) and then they give two columns and my personal results will be in one of the two columns (either in range or out of range). And if it is out of range, then it will be flagged as "L" for "low" or "H" for "high".

Is that what you mean?

also before they send the result they ask about my symptoms/diagnosis. is it normal?

I have never had Quest ask about my symptoms but they do require diagnosis codes from my doctor which are used to bill my insurance company. Since you are ordering the tests from another country, it may be completely different.

the only top lab in my country that i know send lab test to US have partnership only with Quest as far as i know. so im in doubt if i can have the test at Mayo

I am guessing that you can't send blood to Mayo from your country (but I do not know this for sure). I have sent blood from the US to Germany several times for tests that I wanted to do that were not offered in the US (but I did this on my own and my insurance did not cover it).

What about ArupLab? is it superior to Quest? if im not mistaken theres a Lab here that send to them but last time i ask about the ion channel antibody test they cant accept.

ARUP is a very good lab that (I think) is located in Salt Lake City (Utah). I know that ARUP is considered superior for enterovirus testing but I am not sure re: autoantibody testing. In my experience, I would say that Mayo is the best lab for autoantibody testing. I am also not sure how ARUP compares to Quest (overall).

i thought N type n p/q type is very similar?
does that mea. if i testes positive at both it increase my chance of getting the disease worse?

My understanding is that the two types of calcium channel autoantibodies that can be tested for at a commercial lab are the P/Q type and N type. I think there are others but they can only be tested as part of a research study and not a commercial test.

Both P/Q type and N type are associated with LEMS but I think the P/Q type is more common. I am not sure if testing positive for both increases your chances of LEMS. I assume that there are more differences between the two types that I am just not aware of. I am positive for the N-type but negative for the P/Q type (consistently on all tests).

I also test for VGKC AB.

This is the Potassium Channel autoantibodies (and I am negative for those).

i only test for those two. but i read people do the autoimmune panel, neurological autoimmune panel, etc i wonder if i need that.

If you have the opportunity to do an antire paraneoplastic or autoimmune panel, it could definitely be helpful.

since im concerned about the surgery.

Will you be able to consult with the anesthesiologist prior to the surgery?

Thank you again for your interpretation. its really helpful cause so far i cant find anyone/doctor in my country that understand it

I am happy to help if I can and will also reply to your latest PM as soon as I can. One other thing that is important when you test positive for the N-type calcium channel autoantibody (which you did on your Quest results) is to be checked for small cell lung cancer which also correlates with this autoantibody in addition to LEMS. I am not saying this to scare you and I did lung cat scans for 3-4 years and never had any cancer and in my case it was all autoimmune.

 

[Gingergrrl]

Hello! I wanted to let you know that Quest Diagnostics purchased a highly reputable laboratory called Athena Diagnostics. Athena specializes in neurological testing.

https://www.athenadiagnostics.com/about-us

@Zebra That is really interesting re: Athena Diagnostics and I think you had mentioned it in another post a while ago but I had forgotten all about it. I have now bookmarked their page on my computer for future reference.

So, if your doctor feels that confirmation antibody testing is required, they can send your blood sample to Quest, with a requisition form for Athena. (Or perhaps send directly to Athena instead.)

Have you done any testing with Athena? In your experience, is Athena superior to Quest? Also, how would they compare to LabCorp? (re: quality, validity, and reliability of test results)

@Gingergrrl is our LEMS expert, so it's awesome that she still participates in this forum and generously shares her first-hand experience.

I don't know if I am a LEMS expert but thank you for the kind words

1 thing i dont understand why its written the test isnt cleared&approved by FDA? and its developed by quest lab.

I have had many tests (by different labs and not just Quest) in which they give that disclaimer that a test is not FDA Approved. I am not really sure why it is there and I tend to just ignore it at this point

@Gingergrrl actually my inspiration for fighting to get the test. people here dismissed rare conditions since its rare and doctor dont know that too thats why i feel lost.

Rare conditions are often dismissed here, too (although nowhere to the same level as what you are experiencing). Is it possible now that you have a positive lab result from Quest for the N-type calcium channel autoantibody that a doctor in your country could re-test you using a lab from your country (since they might be less likely to dismiss the result if it is from a lab from your own country vs. an American lab)?

since i have abnormal result its should open their eyes theyre wrong to dismiss me and mistreat me. its really hard for me to fight alone finding a way to find my disease let alone the solution

I completely agree and I am so sorry for how badly you have been mistreated by the medical system in your country for so many years. I am really hoping that this lab result might allow them to take you more seriously. Have you had any neurological or muscle testing or any pulmonary/breathing tests?

i think its better if i can have teleconsultation with doctor in US or outside my country whos experienced, knowledgeable in it.

I am going to give you that info via PM although I suspect that you would be required to do the initial consultation in person. The other issue is that if the doctor prescribed treatments, you would need to have a way to do the treatments in your own country. But I still believe that it is worth pursuing and I am so impressed by how hard you are fighting to get all of this info and it is like a full time job having to do this on your own.

 

[Zebra]

Thank you.
i will try to pursue it.
but isnt it the same as Quest too?

Sorry for the delayed response. I'm quite unwell these days.

Although Quest Diagnostics purchased Athena Diagnostics, Athena remains a separate entity. I believe the link I posted might explain the connection and division in more detail.

Unfortunately, I noticed that Athena Diagnostics seems to offer the P/Q VGCC antibody as a separate test, but not the N VGCC. I don't know why that antibody is difficult to obtain as a standalone test.

In any case, your doctor may not feel you need a confirming antibody test if you have other objective medical evidence (like abnormal NCS/EMG) and fit the diagnostic criteria for LEMS.

I wish you the best of luck!

 

[Zebra]

Have you done any testing with Athena? In your experience, is Athena superior to Quest? Also, how would they compare to LabCorp? (re: quality, validity, and reliability of test results)

Hi, @Gingergrrl

Always nice to be in touch with you!

I have had testing done at Athena Diagnostics.

In 2016, or so, Stanford sent my blood to Athena to be tested for a specific mitochondrial disease.

So, I'm guessing that means Athena is up to snuff according to Stanford? Along with Mayo and ARUP, which they also use for out-of-house testing?

I have found that doctors based at Universities, Stanford in particular, are quite skeptical of both Quest and LabCorp, and if I bring abnormal test results from Quest or LC they will repeat the testing in-house.

On the other hand, I think the majority of health insurance companies in the US contact with both LC and Quest, and therefore it's fair to surmise that a lot of Americans receive diagnoses, and treatment, based on LC or Quest test results. So ... it's unimaginable to me that somehow ALL of these lab test results are unreliable? I think (and hope!) that is unlikely.

Earlier this year, my local neurologist ordered some VGKC sub antibodies (CASPR2 and LGFI1) to be tested at Athena, sent via Quest. My local Quest kinda stinks, so I did worry about them not prepping and shipping the sample correctly, but there's nothing I can do about that.

Hope you are well!

Warmly,
Z

 

[kisekishiawase]

@Gingergrrl Thank you for your answers

im considering MRI but without contrst for lung but i dont know if its affective or will xray effective cause cr scan give high radiation and i already get HRCT 2019

ive had breathing test in 2019 and it said some obstructive. they say my breathing strength isnt good.

EMG and with needle test on 2019 when i got muscle pain and tested positive for autoimmune JO1 and they said its normal although im not sure what they check. is that also what they check for LEMS?

no lab in my country can test for ion channel antibody. i guess since its considered rare disease and no doctor test for it. the lab not interested in it.

@Zebra are you still in treatment/recovering?
thats really helpful information. it seems Athena is a good lab that doctor at universities trust? i wonder if i can get blood test there

doctor didnt even order any test after i showed the result. i think i have to ask them instead



anyway do you guys happen to know a specialist in Claveland clinic who experienced in Channelopathy or immune channelopathy? i saw they got teleconsultation service.

i tried to join LEMS community at lamberteatonnews and FB but i cant get in so i dont have any LEMS community

 

[Zebra]

are you still in treatment/recovering?
thats really helpful information. it seems Athena is a good lab that doctor at universities trust? i wonder if i can get blood test there

Hi! I'm sorry to say that I do not have a definitive diagnosis, beyond CFS/ME, so no treatment plan.

I wish you the best in your ongoing work up. Please keep us posted!

 

[kisekishiawase]

i just read the VGKC AB result and its abnormal as well i dont understand how come? i hope the test is wrong but i cant get restest at other lab

although im still pursueing it

it makes me more scared of surgery due to the complication cause having more rare conditions and doctor is clueless

 

[Zebra]

just read the VGKC AB result and its abnormal as well i dont understand how come? i hope the test is wrong but i cant get restest at other lab

In my very humble opinion, I think it's unlikely that you would have two autoimmune channelopathies at the same time. One against the calcium channels and one against the potassium channels. Of course, what do I know?

A rheumatologist recently recommended to me that I consult a neuro-immunologist, that is, someone who specializes in immune-mediated or autoimmune diseases of the neurological system.

Can you seek out such a specialist in your country?

 

[kangaSue]

anyway do you guys happen to know a specialist in Claveland clinic who experienced in Channelopathy or immune channelopathy? i saw they got teleconsultation service.

I don't know if he does teleconsultation but check out Dr Steven Vernino at UT Southwestern, he is one of the pre-eminent experts in channelopathies.
https://www.utsouthwestern.edu/labs/vernino/

i just read the VGKC AB result and its abnormal as well i dont understand how come? i hope the test is wrong but i cant get restest at other lab

LEMS patients with no small cell lung cancer have an increased occurrence of other autoimmune disorders, at least in part due to a genetic predisposition for autoimmune reactivity, in which case also having a positive VGKC ab may be pointing to an autoimmune encephalitis co-morbidity.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6008288/

 

[Gingergrrl]

Hi, @Gingergrrl Always nice to be in touch with you!

I'm quite unwell these days.

I am so sorry to hear that you are doing poorly @Zebra and it is always nice to be in touch with you as well

Although Quest Diagnostics purchased Athena Diagnostics, Athena remains a separate entity. I believe the link I posted might explain the connection and division in more detail.

This is really helpful and I appreciate the info. In the new year I need to do tests for my endocrinologist (and we feel Quest has screwed up my ACTH testing in the past) and I am now going to ask him about Athena. I have also had to deal with some major billing & insurance screw-ups from Quest but that is a separate issue .

In 2016, or so, Stanford sent my blood to Athena to be tested for a specific mitochondrial disease. So, I'm guessing that means Athena is up to snuff according to Stanford? Along with Mayo and ARUP, which they also use for out-of-house testing?

That is so interesting and I also went to Stanford in 2016 and they are the ones who sent my blood to Mayo's Lab which discovered that I was positive for the N-type Calcium Channel autoantibody and also for GAD65 autoantibody.

im considering MRI but without contrst for lung but i dont know if its affective or will xray effective cause cr scan give high radiation and i already get HRCT 2019

I have done three high resolution cat scans of my lungs (in three consecutive years to rule out cancer b/c of the N-type calcium channel autoantibody) and I can confirm that the gold standard for this specific test is WITHOUT contrast dye. There is radiation exposure but there is no way to avoid it w/a cat scan.

So the test that you'd want to start with to rule out potential small cell lung cancer (due to the calcium channel autoantibody) is HRCT without contrast. You mentioned MRI above and I was told that this would not be the test for this and if something suspicious was found on the lung cat scan, that the next step would be a pet scan or a biopsy. Did your doctor mention an MRI for this?

In my case, nothing was ever found on the lung cat scans and my VGCC Ab was due to autoimmunity/LEMS and there was no cancer and it was not paraneoplastic. Let me know if any of this does not make sense or if you have any other questions.

ive had breathing test in 2019 and it said some obstructive. they say my breathing strength isnt good.

I failed every breathing test for many, many years and mine always showed pulmonary restriction (but no obstruction). It was unclear why (which was maddening) until we realized it was due to muscle weakness from the VGCC autoantibody/LEMS. After doing IVIG, I was able to pass the breathing tests, and no longer had muscle weakness of my lungs & diaphragm, and no longer had debilitating shortness of breath.

EMG and with needle test on 2019 when i got muscle pain and tested positive for autoimmune JO1 and they said its normal although im not sure what they check. is that also what they check for LEMS?

The gold standard EMG test for LEMS is the "single fiber EMG" (which unfortunately was never offered to me and I did not have). I was never able to find a neurologist who was able to help me (back at that time).

no lab in my country can test for ion channel antibody. i guess since its considered rare disease and no doctor test for it. the lab not interested in it.

Is it possible for you to send a blood sample to Mayo from your country since you were able to send it to Quest?

i tried to join LEMS community at lamberteatonnews and FB but i cant get in so i dont have any LEMS community

I will send you the info for the LEMS Facebook Group and the N-type Calcium Channel Facebook group when I reply to your last PM.

i just read the VGKC AB result and its abnormal as well i dont understand how come? i hope the test is wrong but i cant get restest at other lab

Was this also from the same panel from Quest? Do you have a copy of it like you did for the VGCC Antibody?

it makes me more scared of surgery due to the complication cause having more rare conditions and doctor is clueless

I am hoping that you can talk to the anesthesiologist before the procedure.

In my very humble opinion, I think it's unlikely that you would have two autoimmune channelopathies at the same time. One against the calcium channels and one against the potassium channels. Of course, what do I know?

I don't know either but in my own case, my doctor felt that my entire immune system went into this "autoimmune chaos" (that was his unofficial term ) and I had 11 different autoantibodies at one point (although I never tested positive for the potassium channel autoantibody).

A rheumatologist recently recommended to me that I consult a neuro-immunologist, that is, someone who specializes in immune-mediated or autoimmune diseases of the neurological system.

This is an excellent idea and I wish that I had seen a neuro-immunologist back in 2016.

I don't know if he does teleconsultation but check out Dr Steven Vernino at UT Southwestern, he is one of the pre-eminent experts in channelopathies.
https://www.utsouthwestern.edu/labs/vernino/

I agree and if Dr. Vernino does teleconsultation, I would definitely try to get an appt and he is one of the top experts in the US on channelopathies.

LEMS patients with no small cell lung cancer have an increased occurrence of other autoimmune disorders, at least in part due to a genetic predisposition for autoimmune reactivity, in which case also having a positive VGKC ab may be pointing to an autoimmune encephalitis co-morbidity.

That was a really interesting article and I had not seen it before. It seems to be focused on anti-NMDAR and VGKC and I was curious @kisekishiawase, do you have symptoms of autoimmune encephalitis (in addition to the LEMS type symptoms)?