Why isn't VGKC testing encouraged here?

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Why isn't VGKC testing encouraged here?

Postby BFSBurger on July 17th, 2013, 10:21 pm

I wanted to ask all the veterans here a question. Given the fact that we all rule out ALS, and that is encouraged. Can I ask why it is never suggested that people get a VGKC test to at least make sure they don't fit firmly in the Neuromyotonia group?

In my mind ALS is something we don't even fit with, symptom-wise.

But if someone were to camp out here for 6 months, thinking they had BFS .... isn't there a chance they might have NMT, and never know it?

Since this test is literally never suggested by anyone here, I am confused. The range of symptoms here is dramatic. There are some here with such severe symptoms that they have to sleep on wood floors with their limbs pinned down with weights.

I think that is evidence that we are not all the same here. Surely there are some whose symptoms are identical to NMT. Not me, maybe not you, but I have read posts here ...

People with NMT sometimes have treatment options, and according to the study data, many NMT patients experience drastic improvement, and even 100% cures sometimes.

Given this possibility, shouldn't we be encouraging people to seek out a VGKC test from their physician?

I realize even with NMT only 40% test positive on VGKC. And I do wish there were better diagnostic tests for it. But I can't help but worry that some here are NMT and would immediately qualify for drastically life improving treatments ... if they only knew to get the proper testing.

ALS should not be on our radar so much.

I dont think we can call it a waste of time.
And I dont think we can call it "anxiety inducing" because everyone on the NMT forum is about a thousand times more chill than people here.
Because they have a diagnosis.
So I can't exactly come up with a valid reason why a bunch of people with textbook NMT symptoms wouldn't be encouraged to at least get checked.

Disclaimer: Not trying to instigate. Genuine, heartfelt question.

Thanks all.

-Burger-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Why isn't VGKC testing encouraged here?

Postby christo on July 18th, 2013, 12:28 am

People here are told to be checked by a neuro then trust him and move on. That's a good advice.
If neuro thinks that others tests are needed then do it, if not trust him and move on. There is no reason to ask your neuro for a test. He knows his job, you don't, dont try to make his job, just trust him.

If you always try to find yet another cause to your symptoms you will never move on.
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Re: Why isn't VGKC testing encouraged here?

Postby bobajojo on July 18th, 2013, 7:06 am

I had this test done on me at the Mayo Clinic (negative). But they told me that 1) only a small percentage patients with neural hyperexciteability would test positive. Before the test was done on me the doctor said he would bet anything that it would be negative (and it was). 2) If positive, there really isn't much they can do. There is one procedure that can be done but its not worth it unless your symptoms are completely debilitating. It involves filtering your blood. 3) For the small percentage of those who test positive, it usually indicates a cancer present and would require further extensive testing to scan the body for cancer. But those people usually have other symptoms related to the cancer. -Matt
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Re: Why isn't VGKC testing encouraged here?

Postby christo on July 18th, 2013, 7:49 am

Matt, to avoid somone read this thread later and freak out, I would quote this :
"Frequency of anti-VGKC antibodies in patients with appropriate clinical syndromes without evidence of cancer is high (>80%)" extracted from a medical website.

If you do test positive for anti-VGKC antibodies, keep calm, there is high probability that you have nothing bad.
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Re: Why isn't VGKC testing encouraged here?

Postby MarioMangler on July 18th, 2013, 10:29 am

There is one factor behind every single piece of advice I give on this board. And that factor is "loss."

When you experience BFS for the first time, the first year or two you deal with it as a newbie, there is one thing that happens to pretty much everyone. And that is that you wind up losing something. For most people this is a job or a spouse or a loved one. Believe me, I have read every single post on this board going back to the early 2000's, and I can't tell you how many people have come through this place over the years. And I swear to God, this is the most frequent outcome for most of those people. This is an ending you will see so many times in the archives on this board that after a while it just becomes a cliche. Here is what you read over and over if you look through the archives:

"I lost my husband over this stupid BFS."
"I lost my wife because she couldn't take me anymore."
"I lost my job because I couldn't concentrate anymore."
"My spouse left me and they took the kids."
"I lost the house because I was so far in debt from the tests."

Like I said before, this is so frequently the outcome for a newbie who gets BFS that after a while I realized that had to be the focus of my advice. My advice to anyone who gets BFS is this: Don't put yourself in a position where you will lose anything. Stop the tests. Stop the whining. Stop the drama. Stop the complaining. Just stop it. Find some way to lessen the BFS symptoms and learn to live with it. And for God's sake stop spending your precious time and money trying to fight it because those things are not limitless, and I know how that ends for people.

I know this sounds heartless but this is just what you see when you read through 10+ years of history on this board. You see no one ever losing their life. But you see people CONSTANTLY losing their loved ones and their jobs. And that is why I advise no tests beyond whatever the neuro tells you. In my opinion seeking out and asking and asking and reasking for more tests will just make you a statistic and a cliche like so many BFS'ers before you. And I think we should be wiser and should be learning from our history. Especially when the archives and the history are so easy to read through and so available.

This is the basis behind every piece of advice I have ever given on this board. Protect your life. Protect your money. Protect what is important to you. Because it is really really really easy to lose it if you continue the path down BFS obsession.
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1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Why isn't VGKC testing encouraged here?

Postby BFSBurger on July 18th, 2013, 10:59 am

Thanks everyone. Christo is correct, a positive VGKC test would not necessarily indicate cancer. Nearly all the people on the Isaacs boards are positive for the test, almost none of them have had any cancer scares. What's even better, they only have to monitor for about 3 to 4 years. Then they are completely done.

I guess we all bring to the table a different mindset. I don't agree that if you start looking, you never will stop. There are only a handful of conditions that match our symptoms. Once those have been examined, there's no reason to keep looking. That's how I would approach it at least.

Bobo you are correct, that most don't really embark on treatments. I'm not sure why. Because the published data shows numerous examples of improvement and complete remission. I guess it's a risk to benefit thing. But I can't help but stand by my view that ALS is less applicable to our symptoms than NMT. Therefore, so should the testing be.

Christo you are correct, once the neurologist rules out ALS we don't need to worry about that anymore. But neurologists don't typically deal with NMT. Very few know anything about it. The four I saw had never even heard of BFS. Drs. are not infallible. All knowing. Or perfect. Their skill set with ALS can be trusted. And should be. But NMT is a much lesser known syndrome. And usually harmless.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Why isn't VGKC testing encouraged here?

Postby johnnythejet on July 18th, 2013, 11:03 am

MarioMangler wrote:There is one factor behind every single piece of advice I give on this board. And that factor is "loss."

When you experience BFS for the first time, the first year or two you deal with it as a newbie, there is one thing that happens to pretty much everyone. And that is that you wind up losing something. For most people this is a job or a spouse or a loved one. Believe me, I have read every single post on this board going back to the early 2000's, and I can't tell you how many people have come through this place over the years. And I swear to God, this is the most frequent outcome for most of those people. This is an ending you will see so many times in the archives on this board that after a while it just becomes a cliche. Here is what you read over and over if you look through the archives:

"I lost my husband over this stupid BFS."
"I lost my wife because she couldn't take me anymore."
"I lost my job because I couldn't concentrate anymore."
"My spouse left me and they took the kids."
"I lost the house because I was so far in debt from the tests."

Like I said before, this is so frequently the outcome for a newbie who gets BFS that after a while I realized that had to be the focus of my advice. My advice to anyone who gets BFS is this: Don't put yourself in a position where you will lose anything. Stop the tests. Stop the whining. Stop the drama. Stop the complaining. Just stop it. Find some way to lessen the BFS symptoms and learn to live with it. And for God's sake stop spending your precious time and money trying to fight it because those things are not limitless, and I know how that ends for people.

I know this sounds heartless but this is just what you see when you read through 10+ years of history on this board. You see no one ever losing their life. But you see people CONSTANTLY losing their loved ones and their jobs. And that is why I advise no tests beyond whatever the neuro tells you. In my opinion seeking out and asking and asking and reasking for more tests will just make you a statistic and a cliche like so many BFS'ers before you. And I think we should be wiser and should be learning from our history. Especially when the archives and the history are so easy to read through and so available.

This is the basis behind every piece of advice I have ever given on this board. Protect your life. Protect your money. Protect what is important to you. Because it is really really really easy to lose it if you continue the path down BFS obsession.

Truth and wisdom.
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Re: Why isn't VGKC testing encouraged here?

Postby magnetizzum on July 18th, 2013, 11:29 am

Great post MarioMangler.....I'm hitting the "like" button
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Re: Why isn't VGKC testing encouraged here?

Postby mwagner on July 18th, 2013, 1:03 pm

Wow, Mario. Great post. You're right: BFS is an obsession for many of us - and for many of us, because we have had anxiety issues before this all started. It's hard to fully accept that something as strange as twitching (and the other sensory stuff) can be benign, and we start searching for answers to get it to stop (because no twitching would end all of our worries). But, you're right - in the grand scheme of everything, for most of us - this is not debilitating in the least. Twitching can be annoying, yes - but it can become background noise.
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Re: Why isn't VGKC testing encouraged here?

Postby dux on January 14th, 2014, 8:02 am

This is a great topic. Il explain my situation.
My symptoms started in 2003 and I did all the tests like everyone MRI, EMG, Nerve conductions, standard bloods etc etc. I have symptoms consistent with most on the board. There have been times even up to a year I thought i was cured.
I was told since 2003 that I have BFS. Not happy with 'just live with it' I saw various neurologist which repeated testing and came out with the same BFS diagnosis.
Not being satisfied I wanted to see someone who would listen to me take the time and just ask about BFS, maybe there have been some treatment break throughs in 10 years maybe.
After 4 neurologist and 4 EMG tests in 10 years I was told I have NMT or hyperexcitability. I have done over 20 blood tests that other neurologist never ordered. All are back except VGKC. In Australia it can take up to 2 months toget results back.
The trouble is not all neurologist are the same and most of them hardly ever come across people like us and when they work out you dont have als or ms they stop being interested and tell you its anxiety etc.
My current neuro said iv always had it and its hard to pick up on emg.
My symptoms are not debilitating as others on the site so irrespective of my VGKC level I may not have any treatment as it comes and goes.
Back to the topic question, in my opinion VGKC should be first test for BFSers out there
I wouldnt be surprised if people on here were positive for VKGC. The shame is there are treatments for it but not all neuros test for it.
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Re: Why isn't VGKC testing encouraged here?

Postby dux on January 14th, 2014, 8:03 am

This is a great topic. Il explain my situation.
My symptoms started in 2003 and I did all the tests like everyone MRI, EMG, Nerve conductions, standard bloods etc etc. I have symptoms consistent with most on the board. There have been times even up to a year I thought i was cured.
I was told since 2003 that I have BFS. Not happy with 'just live with it' I saw various neurologist which repeated testing and came out with the same BFS diagnosis.
Not being satisfied I wanted to see someone who would listen to me take the time and just ask about BFS, maybe there have been some treatment break throughs in 10 years maybe.
After 4 neurologist and 4 EMG tests in 10 years I was told I have NMT or hyperexcitability. I have done over 20 blood tests that other neurologist never ordered. All are back except VGKC. In Australia it can take up to 2 months toget results back.
The trouble is not all neurologist are the same and most of them hardly ever come across people like us and when they work out you dont have als or ms they stop being interested and tell you its anxiety etc.
My current neuro said iv always had it and its hard to pick up on emg.
My symptoms are not debilitating as others on the site so irrespective of my VGKC level I may not have any treatment as it comes and goes.
Back to the topic question, in my opinion VGKC should be first test for BFSers out there
I wouldnt be surprised if people on here were positive for VKGC. The shame is there are treatments for it but not all neuros test for it.
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Re: Why isn't VGKC testing encouraged here?

Postby Little Lost on February 28th, 2014, 3:36 pm

Hello,

For those that were originally interested in this subject (VGKC comple), I came across this due to be published next month ( Mayo study).

Muscle Nerve. 2014 Mar;49(3):351-6. doi: 10.1002/mus.23935.
Cramp-fasciculation syndrome in patients with and without neural autoantibodies.

Liewluck T1, Klein CJ, Jones LK Jr.

Author information 1Department of Neurology, Mayo Clinic, 200 First Street SW, Rochester, Minnesota, 55905, USA; Department of Neurology, University of Colorado School of Medicine, Anschutz Medical Campus, Aurora, Colorado, USA.

Abstract
Introduction: We investigated the clinical, electrophysiological and neural autoantibody characteristics in cramp-fasciculation syndrome (CFS) patients.

Methods: We reviewed Mayo Clinic records from 2000 to 2011 to identify clinically defined CFS patients who underwent neural autoantibody testing. Stored sera of patients who tested positive for antibodies to voltage-gated potassium channel complex (VGKC complex) were analyzed further for leucine-rich glioma-inactivated 1 (LGI1) or contactin-associated protein-2 immunoglobulin G (CASPR2-IgG) antibodies. Results: Thirty-seven patients were identified. Twelve were seropositive for neural autoantibodies. Clinical manifestations were similar in seropositive and seronegative patients, although central and autonomic neuronal hyperexcitability symptoms were more common in seropositive cases. No patients had a malignancy. Repetitive tibial nerve stimulation at 10 Hz revealed longer afterdischarges in seropositive patients. Two of 7 patients with VGKC-complex autoimmunity demonstrated LGI1 or CASPR2-IgG antibodies. Only 2 of 12 seropositive patients required immunotherapy.

Conclusions: VGKC-complex autoimmunity occurs in a minority of CFS patients. Antibody positivity was associated with extramuscular manifestations, typically without malignancy. Target antigens within the VGKC complex remain unknown in most patients. Muscle Nerve 49:351-356, 2014.

Published by Wiley Periodicals, Inc. This article is a US Government work and, as such, is in the public domain in the United States of America.

KEYWORDS: CASPR2 antibody, LGI1 antibody, cramp-fasciculation syndrome, peripheral nerve hyperexcitability syndrome, voltage-gated potassium channel complex antibody

PMID:23836298[PubMed - in process
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Re: Why isn't VGKC testing encouraged here?

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