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


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#16 kitt

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Posted 11 May 2013 - 09:55 PM

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.

 


#17 kitt

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Posted 11 May 2013 - 10:08 PM

 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



#18 Guest_Alex_*

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Posted 11 May 2013 - 10:23 PM

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.

 

thanks for setting the record straight Kitt :)



#19 ramakentesh

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Posted 12 May 2013 - 04:24 AM

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

#20 Natops

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Posted 12 May 2013 - 06:29 AM

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.

#21 sue1234

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Posted 12 May 2013 - 07:51 AM

" 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.



#22 diabeticgonewild

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Posted 12 May 2013 - 11:31 AM

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.mayomedic.../Overview/89904

 

Test ID:89886

http://www.mayomedic.../Overview/89886

 

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



#23 Guest_Alex_*

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Posted 12 May 2013 - 01:12 PM

 

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

#24 kitt

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Posted 12 May 2013 - 01:15 PM

 

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.mayomedic.../Overview/89904

 

Test ID:89886

http://www.mayomedic.../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?



#25 diabeticgonewild

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Posted 12 May 2013 - 01:24 PM

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.



#26 kitt

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Posted 12 May 2013 - 01:32 PM

Sue1234,

 

Sorry!  I didn't mean 'you' personally at all!  Just have had people  insist that all hyper pots patients have high BP, and while that's usually true, it's occasionally not true.  
 

As to  the autoimmune testing Mayo does.  It is not one, two or three tests.  There are at least  ten different tests including:

 

Anti-neuronal Nuclear Ab

N type Calcium channel

Achr Ganglionic neuronal Ab

 

Etc....

 

Don't have a link yet.

 

Here is a link though that describes symptoms associated with AAG.  

 

http://rarediseasesn.../learnmore/AAG/



#27 Guest_Alex_*

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Posted 12 May 2013 - 01:36 PM

Out of curiosity, for those of you who tested positive for the AChR antibody, how elevated were your titers? From what I read these titers are supposedly low in POTS. Thanks, Alex

#28 kitt

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Posted 12 May 2013 - 01:41 PM

Thank you Diabeticgonewild for sharing your treatment protocol.

 

I had plasmapheresis done many years ago.  My husband was the donor.  Are you using a donor or are they using your own blood?

 

How lucky you are to have a neurologist who understands how to treat you!

 

Is it someone local or someone from a big clinic, like CC, Mayo or elsewhere?

 

How are you responding to treatment?



#29 diabeticgonewild

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Posted 12 May 2013 - 04:06 PM

Out of curiosity, for those of you who tested positive for the AChR antibody, how elevated were your titers? From what I read these titers are supposedly low in POTS. Thanks, Alex

 

I am not going to give out a specific value, but mine were < 1.0 nmol/L.



#30 diabeticgonewild

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Posted 12 May 2013 - 04:10 PM

Thank you Diabeticgonewild for sharing your treatment protocol.

 

I had plasmapheresis done many years ago.  My husband was the donor.  Are you using a donor or are they using your own blood?

 

How lucky you are to have a neurologist who understands how to treat you!

 

Is it someone local or someone from a big clinic, like CC, Mayo or elsewhere?

 

How are you responding to treatment?

 

I have no donor, as far as I know. The replacing fluid is albumin. My blood cannot be used, as it has antibodies.

 

I don't see anyone from a big clinic. I see a neurologist in Houston that specializes in neuromuscular diseases.

 

I have never seen Vernino. I don't see the point of doing that. I would have to go to Dallas every 2-3 weeks at least.

 

I am responding poorly to treatment in my opinion. I get better and worse. Overall, I think I am getting better, from my worst point.

 

I have been unable to work and I applied for disability.