Tested positive for ACHR ganglionic neuronal antibodies.

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Tested positive for ACHR ganglionic neuronal antibodies.

Postby skonen on November 1st, 2012, 5:41 pm

After 8 months of symptoms and a rollercoaster of anxiety and fear, I thought I was improving and coming to terms with what was being diagnosed as BCFS. But a neuromuscular specialist decided to run some final tests on me before his final diagnosis, and this included a wide variety of antibodies. One of the antibodies (Ganglionic Neuronal ACHR) came back highly elevated, while many of the very very worrisome antibodies came back negative. Though I don't fit the profile of cancer, and this antibody isn't associated with cancer in a majority of patients, it has me worried. As bizarre as it is I often found comfort in hearing doctor's say they couldn't find anything wrong with me based on tests, because there was always that hope that it was completely psychological. Having antibodies confirmed makes it all seem more "real".

The antibody is sometimes found in patients with Isaacs Syndrome (12%) and Stiff Person Syndrome, but has also been occasionally found in some individuals diagnosed with BCFS. Usually those who have it in those syndromes and conditions report symptoms after a severe viral infection (as was my case). So I'm curious. Have any of you been tested for this antibody and had it come back positive? Or any other antibody for that matter?

On another note. Even though I feel extremely depressed and anxious over the finding now... it does also have a plus side. Most patients (75%) show significant improvement through immunosuppresent therapies, and I've found several papers referring to individuals going into spontaneous remission after plasma exchange.
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby Yuliasir on November 1st, 2012, 11:10 pm

as far as I know it is very specific test... when I was high on anxiety, i thought about this test and found that routine labs do not provide it...
I feel like you may ask for repetition of the test (if it does not cost as as cast iron bridge (as we are used to say)) and see if it is not an artifact. Immunosuppressive therapy and plasma exchange are not like put a sticky tape on the cut finger, you know :))) so it is always better to be 100% sure you really need it and that the level of antibodies would not drop down gradually as your immune system would be self-recovering. Anyway wish you good and weighted medical desicions!
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby allmylove16 on November 3rd, 2012, 5:29 pm

I have also tested positive for this antibody. My neuroligist says he believes this is why I have BCFS. I had CT scan from neck to groin to rule any malignancies. He said I didn't fit the profile for cancer either but knew the tests would give me some peace of mind.
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby skonen on November 4th, 2012, 12:41 am

Thanks for the replies.

@Yuliasir: Yes. As far as I can tell, this test is only done by two labs in the US. One is Mayo and the other has fallen out of my memory. As for being an artifact I was told false positives for these particular antibody tests cannot exist due to their relatively high threshold value... However I intend to ask whether I can get regular testing (perhaps 6 month intervals) to determine whether the pathological cause of my condition is improving or worsening since symptoms are directly correlated to the level of antibodies present.

@allmylove16: I'm glad to hear I'm not the only one on this board who has tested positive. I'm sure it was also a very worrisome time for you as well... Do you happen to recall what the antibody level was? And do you have other neurological symptoms such as occasionally burning hands+feet, excessive sweating, ringing in the ears, etc? My neurospecialist is recommending I go to Mayo for a workup, which will include a PET scan. Is this what you had? I'm rather nervous about the entire thing, and am hoping for a scan result like yours. How are your symptoms doing? Have they stabilized?
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby BFSBurger on November 4th, 2012, 10:09 am

Most patients (75%) show significant improvement through immunosuppresent therapies, and I've found several papers referring to individuals going into spontaneous remission after plasma exchange.

One of the big reasons why I have asked several times if anyone on here has at least *tried* prednisone. Haven't had much luck finding anyone yet.

------------------------

Its kind of funny, on the Aetna web site, they describe their thought process in diagnosing the "unknown condition which causes these symptoms". Strange that Aetna supports this thought process, but most doctors don't:

Aetna considers antibody tests medically necessary for the diagnosis and treatment of neurologic diseases when all of the following are met:

1) The member displays clinical features of the neurologic disease in question ( CHECK! )
2) The result of the test will directly impact the treatment being delivered to the member ( CHECK! )
3) After history, physical examination, and completion of conventional diagnostic studies, a definitive diagnosis remains uncertain ( CHECK! )

These tests are only considered medically necessary when ordered selectively for evaluating persons with signs and symptoms of specific immune-mediated neuromuscular conditions.

The following antibody tests are recommended:

Anti-AChR
Anti-asialo-GM1 Anti-GT1a
Anti-GM1 Anti-La
Anti-GM2 Anti-MAG
Anti-GAD Anti-MUSK
Anti-GD1a Anti-Ro
Anti-GD1b Anti-sulfatide
Anti-GQ1b Anti-VGCC
Last edited by BFSBurger on November 4th, 2012, 10:41 am, edited 3 times in total.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby BFSBurger on November 4th, 2012, 10:27 am

As far as I can tell, this test is only done by two labs in the US. One is Mayo and the other has fallen out of my memory.

Is there more than one "ACHR" test? If you go to Privatemdlabs.com you can type ACHR into their search and they have it. But maybe its not the same type? They use Labcorp usually.

False positives...

Just for the record:

(for the one offered through Labcorp):
"False positives can occur in patients with serum drawn within 48 hours of administration of general anesthesia and muscle relaxants. Recently administered radioisotopes may interfere with the assay in unpredictable ways."
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby allmylove16 on November 4th, 2012, 4:22 pm

There are 2 types of ACHR. The nicotinic ACHR is used to detect myathenis gravis. The ganglionic ACHR is used to detect autonomic dysfunction. According to my neurologist the gACHR is highly sensitive and false positives are rare. My paraneoplastic blood series were sent to Mayo for evaluation.
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby BFSBurger on November 4th, 2012, 7:02 pm

How did you all get any sort of referral to mayo clinic? I got laughed out of the office when I suggested that. I attempted to set up an appointment directly with them in Minneapolis, and they told me they will not accept without referral.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby BFSBurger on November 4th, 2012, 7:03 pm

How did you all get any sort of referral to mayo clinic? I got laughed out of the office when I suggested that. I attempted to set up an appointment directly with them in Minneapolis, and they told me they will not accept without referral.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby Slippy91 on November 5th, 2012, 2:07 am

Hi, i've been following your posts since your symptoms sounded similar to mine (cogwheel like rigidity and fascics). I was wondering what sort of condition this positive test would imply? I have not been tested for it (and it's very unlikely that I could be), but from reading about it it appears to be associated with autonomic dysfunction in some cases. I have twice been diagnosed with POTS (postural orthostatic tachycardia sydrome), a form of dysautonomia.
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby skonen on November 13th, 2012, 9:45 pm

@BFSBurger: You can get into Mayo directly without a referral, but it takes time and you'll be working with a head nurse over the phone who will 'triage' you over several calls to determine whether you have a chance to get on their list. However without having a life threatening condition, or without having bizarre test results, the chances of you getting in are slim if you have a primary care doctor/neurologist currently working with you. In my case, my referral was opened due to the positive antibodies for a test/diagnostic procedure Mayo helped pioneer.

@Slippy: There is no specific non-syndrome diagnosis the positive test implies... It does however verify you have an autoimmune disorder, and the presence level of the ganglionic antibodies directly correlate to symptom severity in studies. Unfortunately about 30% of those with the antibodies have some underlying malignancy according to one Mayo study of over 15,000 neurology patients. However many also had other red-flag antibodies as well, and that 30% was calculated from individuals who opted into cancer screens using tests such as PET scans... and being those tests deliver a very high level of radiation it's likely many of those that 'opted' in already had risk factors for cancer (smoking, heavy drinking, hazardous environments, etc) otherwise they'd be advised against the heavy hit of radiation.

With that being stated, if you do test positive for the antibodies, you'll likely have one or more cancer screens using standard x-rays and physical examinations. If they don't find anything, you'll likely be given immunosuppresent treatment options and/or be sent on your way. If they do find something, by the nature of the antibodies it will likely be in a very early and treatable stage, in which case the neurological symptoms can be completed cured as the malignancy is treated.

Slippy what's interesting is that the antibodies are strongly associated with dysautonomia, and in particular POTS which you say you have. I have also been suspected of POTS, as I have sinus tachycardia (my heartbeat is typically about 100) and was diagnosed less than a year prior to my twitching, stiffness, pain, cramping, tremoring, etc. One good thing about you having been diagnosed with POTS is that it generally has a excellent prognosis, with full recovery expected if you obtain it as a young adult.
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby BFSBurger on November 13th, 2012, 10:17 pm

Skonen - how do we get this test then? I am all about the testing .... and i frequently use an online test service to order my own.

But if we physically CANT get this test, how can i answer the question in the first post? LOL ... (thats the most important thing)

No really .... what if this answers the questions for some of us ... and I can tell you right now no doctor is going to run it.
How I resolved my BFS within 1 year of onset:

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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby skonen on November 13th, 2012, 10:39 pm

The reason the test was given to me was not to look for ACHR ganglionic neuronal antibodies specifically, instead it was taken to search for VGK+ (potassium channel) antibodies... If the potassium channel antibodies come back positive it generally means a diagnosis of neuromytonia (which you can think of as a 'sibling' to BFS, because though annoying, it also will not disable you).

If you are truly interested in these tests, you can mention it to your neurologist. The test description is here: http://www.mayomedicallaboratories.com/ ... view/83380 . I would however stress that if the neurologist sees the test as unnecessary that you trust his judgement.
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby BFSBurger on November 14th, 2012, 8:30 am

I dont know how medically inclined you are or anything, but one of the millions of things I've been entertaining since this started has been my extremely powerful course of Augmentin 800mg for 10 days just prior to onset of symptoms. Augmentin is unique in that it contains "clavulanate Potassium" ... so its not just Penicillin but Penicillin + clavulanate Potassium. I did find one web site that associates the medication in its "600mg form" with onset of Hyperkalemia (excessive Potassium levels). I was on the 800mg course. And Hyperkalemia I believe is heavily associated with Neuromytonia. Additionally, on my first set of bloodwork about 2 days after this all started, my only abnormal test result was excessively high Potassium levels. Everything else was normal. Any thoughts on this?

You can imagine I was a big fan of the TV show "House". Every symptom has a cause, and reveals a clue, just like every abnormal test result. It can be intellectually challenging and entertaining to try and figure out the riddle!

I would however stress that if the neurologist sees the test as unnecessary that you trust his judgement.

I hear statements like this a lot. Just to play Devil's Advocate here ... what is the thought process behind statements like this? That the doctor is infallible? That if someone requests that the test be run "anyways", something bad might happen? Of course both of those sentiments are nonsense. There is a pervading archaic mentality that Doctors are never wrong. And suggestions like the one above cater to that mentality, even if the person saying it doesn't realize it. You are in fact stating that the doctor is infallible. I can't agree that we should humbly submit ourselves to the extent of whatever life experience they've had, and pray to God that they're right. What would be the downside of ordering an "unnecessary" test? I guess that's the real question here. Money spent is all I can think of. Some people say it taxes the medical system as a whole, but that is nonsense, because Labs run the tests, and they are paid for their service. All it does is increase the income of the Lab. There is no downside. And I probably dont need to recite for everyone the endless stories of doctors who "didnt feel it was necessary" to do something, and it ended up harming the patient. My mother being one of them. Dead the same night. Respectfully, I will order every unnecesary test in the book, if it may reveal clues to the cause, and expedite potential for treatment. I myself was put on HIV Prophylaxis after an exposure. I had 72 hours to get on *proper* treatment or my life was over. The first doctor, a well known physician at a Hospital, put me on the *wrong* medications for post exposure prophylaxis. I went home and spent my first (and most important) 24 hours on medications that were not recommended. Thanks to the evil Dr. Google, I found that out, and was back at the hospital requesting proper medications immediately. Thank God I bothered to check. At my 1 week follow up, one of the most well-known HIV specialists in Miami met with me and told me that he wished me luck, but didn't have much hope the prophylaxis would work. He apparently had no clue of the 98% success rate published in numerous journals. Thank God he was ill-informed. I have stories like these that could fill pages. Sorry to hijack the thread.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby Slippy91 on November 22nd, 2012, 8:49 am

@ Skonen

I think, given the sheer amount of testing that I have undergone (bloods, MRI, x-rays for scoliosis etc), I can rule out underlying cancer being present. I did smoke for a brief period two years ago but it was such a low amount (probably less than 100 cigarettes in my life time) that I doubt it affected anything. I barely drink either.

My POTS was diagnosed earlier this year. I had been taking beta blockers for anxiety, panic attacks and palpitations. I was on them for about 8 months and got a raft of health issues from them such as poor circulation, chest pain, reynaud's, heart block.. the list goes on. I had a bad episode one night where I felt like I was going to collapse so I was taken off them - I developed the POTS immediately afterwards (and funnily enough also sinusitis). It is suspected that i've always had it to an extent, and perhaps it was just exacerbated when I came off the beta blockers. In any case, I have it under control with a drug called ivabradine, and even when I don't take it it's much better. My resting heart rate on medication is 60bpm, and up to about 80-90 if I don't take it (the dosage is up to me they say). It was the spikes up to 170 that I would sometimes get that they were trying to eliminate with the drug, and they're completely gone now, on or off medication. My rhythm is also classed as sinus tachycardia, although my blood pressure isn't affected much, so it's probably a borderline case of POTS. I am hopeful that this fact and being only 21 improves my chances of recovery over the next few years.

As for these antibodies, I doubt I will be able to ask for such a specific test in the UK, but it's useful to know that there is an option out there if my doctor is so inclined.
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

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