Autoimmune Testing Back From Mayo - Any Idea Of What Presence Of "calcium Channel Binding Antibody, N-Type" Means?

[Miqual]

Hi everyone, after a detour to being fully medically prepped and literally days away from surgery to remove my adrenal gland even though they had no MRI/CT evidence to match the mIBG scan and hormome levels, an outside Endo stepped in and said it wasn't Pheo. I'm back in the Autonomic Neuro direction for diagnosis. My Autonomic Neuro specialist at Stanford had sent my blood off for the Mayo Autoimmune profile and the results just pushed to my patient web account so I could see. It's showing the presence of "Calcium Channel Binding Antibody, N-type." It says "This profile, in the proper clinical context, would support neurological autoimmunity. A paraneoplastic basis should be considered."

I'm set to have my full autonomic neuro testing routine done at Stanford's lab on June 10th. The Dr's assistant told me he didn't feel there was a need for a referral to an autoimmune specialist yet, but after testing process, the Dr. will further discuss results and next steps.

Anyone here with autoimmune basis for their Dysautonomia and have familiarity of what this test may mean?

[Guest Alex]

A while back I've read something about some calcium channel antibodies being elevated in the Eaton Lambert syndrome (a disorder that involves weakness of the muscles in the arms and the legs - a while back I suspected I had that along with every other illness out there) I hope I'm not mistaken. Unfortunately, that's where my 'extensive knowledge' on this subject stops.

Sorry I can't be of more help

Hope you're getting some answers soon.

Best,

Alex

[davecom]

If I were you I'd be excited - this might be the link you need to get better!

[HyperPOTS8]

Hi Miqual--if you test positive for the ACh ganglionic receptor antibody then you are given the diagnosis of autoimmune autonomic ganglionopathy and IVIG, etc are used for treatment. I also tested positive for one of the other many antibodies on the panel (striational antibody in my case), and was told by one of the Mayo autonomic neurologists "we see this all the time, but we don't know what it means." It turns out that my autonomic disorder is due to antiphospholipid syndrome and I have been getting IVIG for the last 6 months and it has helped me greatly.

[Natops]

I tested postitived for Calcium Channel AB N-type from the Mayo Clinic last year! I'll private message you.

[ramakentesh]

The presence of autoantibodies even at high tigers does not prove they are pathological. Do you know if they were interfering with calcium ion channel activity?

if calcium channel input at the sympathetic synapse was being reduced it would mean that normal levels of notepinephrine would have reduced effect on post ganglionic alpha 1 and alpha 2 adrenoreceptors causing reduced vasoconstriction.

the opposite would cause enhanced orthostatic vasocobstriction and cerebral vasospasm.

[ramakentesh]

I think most forms of pots will eventually be treated with ivig.

[Miqual]

My Dr's assistant mentioned that particular Autoimmune antibody is often found after people catch Epstein Bar and the Dr isn't reading into the test result much yet. He wants to do all the Autonomic Neuro testing first and pair it all together.

When I had my first appointment with him after fighting to get my old GP to get me to see a Dysautonomia specialist, I suspected there would be an autoimmune component found given my family history and asked the Dr if that could be investigated. On my Dad's side, one aunt has Lupus, another aunt had Graves Disease and had her thyroid removed, my grandmother had rhuematoid arthritis, my grandfather had thyroid cancer, and then both grandparents died of lung cancer. My younger brother was diagnosed with juvenile rheumatoid arthritis as a child. On my Mom's side she is diagnosed with fibromyalgia and fought breast cancer, her sister is dying of Breast Cancer, and my grandma had RA, and my grandfather died of bone cancer. A heavy autoimmune and cancer history in the family.

Strange thing too is my father this summer caught a "mystery" virus that at one point was diagnosed as Lyme Disease, another time as West Nile, and then they said they were not sure what he actually caught. He's now having some symptoms similiar to my Dysautonomia type symptoms as we're all a bit freaked out.

[issie]

Genetics, autoimmune and inflammation. Work at that level and do what you can to support those things and that will probably be the best we can do. I also have something similar to Lyme - different organism. Some of us finding this out. Comes back to the immune system, not detecting the things it should. Support that and then see what's left after that. Do the best we can with our diet and weight. Try to stay as active as possible. Keep a good and positive attitude. Enjoy life to the best of your ability and appreciate the small, seemingly insignificant things and never take your friends and loved ones forgranted.

Issie

[Kris4444]

Miqual I have been saying EBV is the cause of ALL of my problems as this is how everything started. They FINALLY started me on antivirals last month after having ridiculosly high EBV levels since 2008!

Please let me know what they find out about this N type antibody. Do you have severe flushing? Vertigo when you stop exercising? High NE??

[Natops]

Miqual, I have the N-type antibody. It’s been verified twice at the Mayo Clinic lab. As my doctor has told me and as my research on the internet confirms – this calcium channel antibody has a strong association with Lambert Eaton disease. Usually (95%) of LEMS patients test positive for the P/Q antibody – but the N-type can show up in up to 50% of patients. The AB attack the calcium channel at the muscle and nerve junction (Channalopathy) reducing the Ach to the muscle.

50% of LEMS patients either have or will develop cancer – specifically Small Cell Lung Cancer (90%). The other 50% is autoimmune in nature. My doctor told me regardless that he believes mine to be autoimmune in nature – I have to get screened for cancer (CT/PET) every 6 months for the next two years as a precaution.

While I do have weakness (the primary symptom of LEMS) I do not share all the other autonomic symptoms associated with LEMS (dry mouth, erectile dys, double vision, droopy eyes, difficulty swallowing) Also LEMS usually shows up on an EMG. I’ve had 4 EMG and they were all normal. POTS/ SFN are not symptoms of LEMS. My POTS doctor told me he does not believe this N-type AB is the cause of my POTS or small fiber neuropathy or feet/legs body pain. He believes some other AB is the cause of which he does not know.

The key thing I took away from this was the medicine used to treat LEMS. It’s called 3,4 DAP. 3,4 DAP is only available through clinical trials. My doctor was able to obtain it for me (after a 6 month wait…approval through FDA). I take it in conjunction with my Mesiton. It supposed to improve strength by expanding the calcium channels. It does help me.

[kitt]

Miqual,

I've been researching this autoimmune form of pots for the last month. There's some good information on the internet, but not enough. Hope you'll share what you learn as you go along and your experience with IVIG if you go that route.

From an article by Dr. Grubb.

Pasting:

Many patients will report the abrupt onset of symptoms after a febrile illness (presumed viral), as well as after pregnancy, immunizations, sepsis, surgery, or trauma. It is currently felt that this form of POTS has an immune-mediated pathogenesis. Studies have demonstrated serum autoantibodies to alpha3 acetylcholine receptors of the peripheral autonomic ganglia in patients with postviral autonomic neuropathy.

It's true that all auto immune testing for this must go to Mayo.

Here's the link to Dr. Grubb's paper.

http://www.lupusmctd.com/index.php?topic=1974.0;wap2

[Guest Alex]

I believe the 'authority' in the autoimmune autonomic ganglionopathy Kitt is talking about is dr Steve Vernino. I've seen quite a lot of full text articles published by him and/or his collaborators. He is the one who 'patented' the blood test for the AChR antibodies not that long ago.

Alex

[sue1234]

I tried to get into Dr. Vernino last year but couldn't. I had to send all my POTS records and apparently I didn't "fit" into what he is seeing. I believe, and this is just from all the studies I've read by him, that he is looking for POTS people that get low blood pressure when upright. I get steady or high blood pressure. I would still like the doctors to think that we might have an autoimmune issue also, just maybe a different one.

[issie]

Sue,

There are a few docs out there thinking that those of us with the higher bp's and Hyper type symptoms with high NE is autoimmune related. When I started treating in that direction, I started having improvements.

Issie

[kitt]

Alex,

You're right, Dr. Vernino is entitled. Thank you for adding that!

But so is the Mayo Clinic. He and the Mayo Clinic developed the test in together.

Here's a comment from Dr. Vernino regarding his experience.

Pasting:

“When I was at the Mayo Clinic we developed a test to look for antibodies against a particular receptor in the nervous system. When these antibodies bind to that receptor, they block the control signals that need to get to the autonomic nerves. When that happens, the body can’t regulate the blood vessels, the heart, the stomach and the sweat glands to have them operate normally,” Dr. Vernino said.

Here's the link. http://www.utsouthwestern.edu/education/medical-school/departments/neurology/news-and-events/news/steven-vernino-aag-baseball-player-hope-diagnosis.html#

[kitt]

Sue, I also have the low BP upright and also have extreme hyper pots. Not all hyperadrenergic pots patients have high BP. Perhaps most but now all. I know of a Dinet member who also has hyper pots and also has low blood pressure, so please don't tell me it's not possible.

My understanding with this specific condition is that often the diastolic BP drops quickly. Mine does, so am wanting to get this testing done, but am deciding if I can do it from home with a current doctor or if I should go to Mayo. Have been there many times, and they do a good job, but it's costly and tedious. Regardless of what testing you've had done, they will redo all testing. All.

I stopped counting last year after my cardiologist billed my insurance over 15,000.00. Worth it, but thinking about spending the time, energy and money to do it all over again at Mayo is tiresome. Lucky to have good insurance, but it seems excessive.

But that's how Mayo operates. You can give them all the prior records you have and regardless of how recent or exceptionally done, they will redo every single test.

Miqual had this test done from afar, and that's the way I'd like to proceed. I'd like to get the precise code for ordering this test so I can share it with a doctor who will order it. If anyone can share that I'd appreciate it.

Best,

K

[Guest Alex]

Alex,

You're right, Dr. Vernino is entitled. Thank you for adding that!

But so is the Mayo Clinic. He and the Mayo Clinic developed the test in together.

Here's a comment from Dr. Vernino regarding his experience.

Pasting:

“When I was at the Mayo Clinic we developed a test to look for antibodies against a particular receptor in the nervous system. When these antibodies bind to that receptor, they block the control signals that need to get to the autonomic nerves. When that happens, the body can’t regulate the blood vessels, the heart, the stomach and the sweat glands to have them operate normally,” Dr. Vernino said.

Here's the link. http://www.utsouthwestern.edu/education/medical-school/departments/neurology/news-and-events/news/steven-vernino-aag-baseball-player-hope-diagnosis.html#

thanks for setting the record straight Kitt

[ramakentesh]

Vernino now works with Ben Levine and the two of them were unable to find the a3 acetylcholine nicotinic receptors in any pots patients.

[Natops]

That’s good information kitt. I’m trying to find the TEST ID on for this Alpha 3 acetylcholine antibody test on the Mayo’s website. I can’t find it. I want to see if it was part of my paraneoplatic panel. I don’t think it was. If it wasn’t – I am definitely going to ask my doctor to have it run.

[sue1234]

" Sue, I also have the low BP upright and also have extreme hyper pots. Not all hyperadrenergic pots patients have high BP. Perhaps most but now all. I know of a Dinet member who also has hyper pots and also has low blood pressure, so please don't tell me it's not possible."

I'm sorry Kitt, I'm not understanding what you mean? I didn't say anything about hyperadrenergic.

[diabeticgonewild]

That’s good information kitt. I’m trying to find the TEST ID on for this Alpha 3 acetylcholine antibody test on the Mayo’s website. I can’t find it. I want to see if it was part of my paraneoplatic panel. I don’t think it was. If it wasn’t – I am definitely going to ask my doctor to have it run.

I think there are 3 different "tests" that Mayo can do that test for this antibody. They are all the same panel (the same tests) but have different IDs.

These are the two I found.

Test ID:89904

http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

Test ID:89886

http://www.mayomedicallaboratories.com/test-catalog/Overview/89886

I tested positive for the antibody you listed. I have AAG and I have been receiving treatment for over a year now.

[Guest Alex]

 

Vernino now works with Ben Levine and the two of them were unable to find the a3 acetylcholine nicotinic receptors in any pots patients.

 

That's strange given that I've read some articles Vernino published where low titers of the antibody were associated with POTS.

Warning, sarcastic comment to follow:

Did they find "Grinch-sized-hearts"?

Alex

[kitt]

That’s good information kitt. I’m trying to find the TEST ID on for this Alpha 3 acetylcholine antibody test on the Mayo’s website. I can’t find it. I want to see if it was part of my paraneoplatic panel. I don’t think it was. If it wasn’t – I am definitely going to ask my doctor to have it run.

I think there are 3 different "tests" that Mayo can do that test for this antibody. They are all the same panel (the same tests) but have different IDs.

These are the two I found.

Test ID:89904

http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

Test ID:89886

http://www.mayomedicallaboratories.com/test-catalog/Overview/89886

I tested positive for the antibody you listed. I have AAG and I have been receiving treatment for over a year now.

What treatment are you receiving? Some people take IVIG and others are prescribed steroids. How about you?

[diabeticgonewild]

What treatment are you receiving? Some people take IVIG and others are prescribed steroids. How about you?

I was diagnosed in January 2012.

I first received 5 consecutive treatments of plasmapheresis (in about a week's time). Then, a month later, I started on IVIG. I received that every 2-3 weeks for about a year (up until March 2013), until it became ineffective. I now have plasmapheresis every 3 weeks, two treatments each time.

The current order for plasmapheresis is for six months. I will probably switch back to IVIG around September.

My neurologist says that sometimes IVIG becomes ineffective and that you have to switch to another treatment for 6 months. After that, you can switch back to IVIG and you start seeing improvement again.

I also have type 1 diabetes so steroids would be a nightmare, since I take insulin. My AAG is too severe to only take steroids.