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)?