If BFS is auto-immune: some thoughts on treatment

Information about how to manage or reduce the severity of BFS symptoms

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If BFS is auto-immune: some thoughts on treatment

Postby AL C on November 25th, 2004, 1:11 pm

Dear all,

I want to raise the issue of the probable autoimmune basis of BFS and avenues for non prescription treatment that might result.

I have access to the papers that StevePaul has mentioned recently in previous posting ('What you might experience with BFS', 10th November). Unfortunately he has still not heard back from his neuro (Mr Hart) about distributing the most important of these, which is:

Phenotypic variants of autoimmune peripheral nerve hyperexcitability , Ian K. Hart, Paul Maddison, John Newsom-Davis, Angela Vincent and Kerry R. Mills. Brain, Vol. 125, No. 8, 1887-1895, August 2002.

Mr Hart and a couple of other British neuros would seem to be some of the very few paying the spectrum of disorders covered by their term ‘peripheral nerve hyperexcitability (PNH)’ any serious attention. It would appear overwhelmingly likely that BFS is a form of PNH (at the mildest end of the acquired PNH spectrum). I have read the paper and several others (as an academic I have access to most journals), and am personally persuaded that the vast majority of people diagnosed with BFS, and probably myself, have an autoimmune disease directed against voltage-gated potassium channels. Certainly anyone (like me) who has continuous twitching in calves and feet (irrespective of sporadic activity elsewhere) or (like me) also gets transient tingling in hands and feet (distal limb paresthesias) or (unlike me) sweats more than they used to, would appear a particularly likely candidate for an auto-immune explanation of their condition.

As with any auto-immune disease, once you have one you’re at increased risk of getting another, and the Hart paper quantifies this (though the sample is small and generally has more severe signs and symptoms than the typical ‘BFS’ sufferer on this site, so keep in mind the low level of disease associations in the larger Mayo sample).

The point I want to make is that we should be addressing our attention to the auto-immune nature of the condition rather than going over the old ground of could it be ALS or worrying about a new twitch in a new place (I have nowhere left on that front :P). If we must worry, even in the light of the Mayo study, then should be worrying about other autoimmune diseases, particularly those shown to have clinical associations with the more severe forms of PNH in the Hart paper.

And I don’t mean worrying in silence, this is something we can actively address. In the light of what these British neuros are saying, and I hope StevePaul can put the paper up soon, I advocate the following:

1. Get your neuro to fully test for other auto-immune diseases (in addition to Anti-voltage-gated potassium channel antibodies - which may or may not show up). The paper gives details. I’ve just written to my neuro and am hoping for a positive response. Failing this I’ll go private and see StevePaul’s neuro.

2. Look into vitamins/minerals/supplements that modulate (NOT boost) the immune system. There’s a lot of evidence, even some clinical trials, to show that modulation of the immune system can ease the symptoms and/or delay progression of the more common auto-immune diseases. Of course none of this relates to BFS/PNH as it’s so rare/understudied, but there’s extensive information in connection with lupus, thyrotoxicosis, Rheumatism, MS, diabetes, Fibromyalgia, and the like.

As ever, you have to sort the wheat from the chaff when looking at health information on the Internet.

The most promising avenue seems to be:

Sterols and Sterolins - they appear to be able to turn down auto-immune activity without suppressing the immune system as a whole, which immuno-supressant drugs (e.g. prednisolone and azathioprine), sometimes used to treat neuromyotonia, do. There would seem to be a proven clinical benefit in relieving the intensity of many auto-immune conditions,

See for example: http://www.drhoffman.com/page.cfm/216

Other promising things, in no particular order, are:

Vitamin D (along with calcium and magnesium)
Vitamin B12 (methyl form)
Vitamin B6
Trimethylglycine(TMG)/SAM-E [TMG is much cheaper]
Alpha Lipoic acid
L-Carnitine
Various fish oils/evening primrose/flaxseed/linseed oil (EPA, omega 3, GLA, etc.)

[obviously you need to think carefully about doseage, and check with your doctor/neuro if you’re on any meds, though I doubt they’ll have anything useful to say about possible interactions].

This would seem like an avenue worth pursuing. Not only does it offer the possibility of tuning down the BFS/PNH symptoms a little (or maybe even a lot), but also reducing the risk of acquiring another of these irritating, and in some cases serious, auto-immune conditions in later life.
Best wishes to all,

AL C
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Postby LadyChester on November 25th, 2004, 3:23 pm

I found this article last week as well! I read it and made an apointment immediately with my neurologist to see if he will order an VGKC antibody test. I'll see if I can post a link to the abstract - there is also a button you can click and see the entire article:

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

Hope the link works!
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BFs autoimmune

Postby stevepaul on November 25th, 2004, 4:07 pm

Hi Alasdair.

Thank you, thank you very much. It really is refreshing to hear someone talking complete common sence with regards to this disorder. As you say what is the point of repeatedly going over the same ground of could it be -+++ which = ALS, when people have had it for months. As for " Help new twitch" or New twitch reassurance needed" please give me a break, as I have said before "its just another twitch but in a different place" so why panic. I'm sorry if these comments offend people on this forum, but even if no one replied to these posts there would still be more than enough information to but peoples minds at rest.

I know that peole will be saying " its allright for them, they have seen what the British neuros have published " but as you and I know, some of it is not pleasant reading, David (DWL) has broached the subject with me and I intend to get clarifcation regarding the difference between the Mayo paper and the Hart paper, but I don't think any of us are particularly worried about the findings.

On a lighter note. The Maddison paper you sent me about Neuromyotonia. I have been in touch with him via email and he replied within hours giving me his permission to add it to the website. I then got in touch with the Publishers who also replied within hours and it is looking like I have secured the rite to reproduce this article on the site.

At the moment I am redesigning the site and addng the work done by Maddison, the new site should be up soon. No one more than me is frustrated at not being able to include the results of the Hart, Maddison study but as Mr Hart informed me it requires updating. I might email him and try to find out what the situation is. I don't think people fully understand just how busy these neuros are, tending to think that they just sit there all day seeing patients and not realising the amount of work that goes on in research.

If you are having difficulty getting to see Mr Hart through your neuro, then please let me know by the 24/1/05 and I will ask him how you would go about seeing him privately.

Take care Steve.
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Postby stevepaul on November 25th, 2004, 5:41 pm

Ladychester.

I think you might have saved me a lot of work by adding the link in your reply. This is part of the article given to me by my neuro Mr Hart. I get my information straight from the horse's mouth so to speak so I was unaware that it was allready freely available on the net. At least now everyone will be abe to read the results that me and a few others have known for awhile, and hopefully if the updated version isn't to different then I won't have to add it to the website.

In the short time you have participated in this forum you really have added some usefull links. You should be commended for the research you have done in finding out as much as you can about PNH. I just wish this much info had been available when I was looking back in 95.

Well done Steve
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Postby dwl on November 26th, 2004, 1:48 am

For those getting VGKC antibodies checked, remember that the test isn't all that sensitive and false negatives are common - see the full text of the Maddison/Hart paper for details. You might also want to ask your neuro to test for acetylcholine receptor antibodies and ANA while they're at it.

I'm very sure these guys are on the right track. I posted details about this paper about 18 months ago & very few people seemed to be interested - I thought it would have set the heather on fire (as we say here in Scotland).

I also find this type of discussion much more illuminating than the "omigod I've now got twitching in XYZ region I must have als" stuff.

David
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vgkc testing

Postby stevepaul on November 26th, 2004, 7:41 am

David

I know you, like me and Alasdair will have read the Hart paper through and through but I thought I would just mention that as I understand it, and like you say, the standard VGKC test isn't all that sensitive where as the test using the molecular technique is a more efficient way of identfing that most patients may well have VGKC antibodies. As you will have seen 17 out of 19 Group A patients tested this way indicated that their serum may well have the VGKC antibodies and that 7 of these patients had previously tested negative using the standard technique.

I don't think that people asking to be tested for VGKC antibodies would have much success. As you said in an earlier post this really is a super specialised procedure and much cost a fortune. I'm pretty sure that it was only carried out on the 60 paitents in the Hart study, as a means of trying to identify if there was a link to antibodies that would suggest an autoimmune relationship.

I'm with you that this type of post is much more interesting than the "oh my gods". I have also noticed this trend that when good information is available it dosn't seem to generate much interest. I wonder that, now a version of the Hart paper is there for all to read wether this trend will continue. It will be interesting to see what the updated version contains.

Steve
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Have pdf

Postby Davey on November 29th, 2004, 2:17 pm

Hello all.

If you would like a pdf copy of this article, you can download it at:

link
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Postby LadyChester on December 6th, 2004, 7:35 pm

I spoke to my neuro and he said he'd consider the antibody VGKC test; I'm dropping off several articles and see what he says. For those that do possess the VGKC-blocking antibodies, these recent studies (as well as the May study) all suggest that plasmapheresis or plasma exchange might be a treatment option. By eliminating the antibodies that that may cause the problem it would stand to reason that this would provide relief for those of us who are having severe symptoms. I know this may sound like an extreme solution, but it works for a number of other antibody-related diseases, and I'm wondering if anyone has any more specific input about this. I know that plasmapheresis or plasma exchange is not without risk and it will need to be repeated to maintain control.

Also, FYI ... the National Institutes of Health is enrolling individuals in a study to identify more effective ways to screen neurological conditions that cause muscle stiffness. I will post the pertinent information under "General Topics" if anyone is interested. I'm going to call and enroll tomorrow. Maybe it will help future patients with problems like ours!
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Plasma exchange

Postby Davey on December 7th, 2004, 3:01 pm

Plasmapheresis and plasma exchange might be an option. Treatment with prednisone or other steroids would probably come first.
Cheers,

Dave

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"Do not fear death tomorrow so much that you forget to live today."
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Postby LeeNC on December 7th, 2004, 7:43 pm

Davey:

I think it was StevePaul who noted that plasmapheresis was used awhile back but is no longer the first choice in treatment.

Also, if you can live with your symptoms, you might want to rethink the quick signup for a steroid - those are powerful drugs with myriad side effects.

Someone else noted that the VGKC antibody test is not as clearcut as we'd hope, either. But it beats a poke in the twitchy eye.

Anyway, good luck with the Dec. 10 appt., and do report!

--LeeNC
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Postby PDR on December 8th, 2004, 9:34 am

VGKC anti-body titer

$750.40

It is ordered under CODE 83380

REPORTING NAME "PARANEOPLASTIC AUTOANTIBODY EVAL, Serum

It gives a HOST of results. However, you have to Specify you want a VGKC antibody titer.....

It is sent to the MAYO CLINIC in Rochester, MN........

USEFUL FOR:

Investigating a subacute mutifocal neurological disorder without obvious cause, especially in a patient with past or family history of cancer, or smoking history.

Directing a focused search for cancer.

Investigating neurological symptoms that appear in the course or wake of cancer therapy, and are not explainable by metastasis

Differentiating autoimmune neuropathies from neurotoxic effects of chemotherapy

Detecting early evidence of cancer recurrence in previously seropositive patients.

INTERPRETATION

Abs directed at onconeural proteins shared by neurons, muscle, and certain cancers are valuable serological markers of a patients immune response to cancer. They are not found in healthy subjects, and are usually accomplished by subacute neurological symptoms and signs. Several AAbs have a syndromic association, but no known AAb predicts a specific neurological syndrome. Conversely, a positive AAb profile has 80-90% predicitve value for a specific cancer. It is not uncommon for more than one paraneoplastic AAb to be detected, each predictive of the same cancer.

CAUTIONS

Negative results do not exclude cancer.

The Paranepolastic AutoAb Evaluation does not detect Ma2 Ab (alias: MaTa). Ma2 has been described in patients with brainstem and limbic encephalitis in the context of testicular germ cell neoplasms. Scrotal ultrasound is advisable in men who present with unexplained subacute encephalitis.
Last edited by PDR on December 8th, 2004, 11:30 am, edited 2 times in total.
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Postby LadyChester on December 8th, 2004, 9:46 am

Thanks for the info ... hery helpful. I had determined that the only place a thorough test could be done was at Mayo, but having the codes is extremely helpful!!!
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Postby dwl on December 8th, 2004, 1:04 pm

interestingly, my neuro told me that many patients with lung cancer and no neuro symptoms have abnormal emg's because of abnormal antibodies associated with the cancer.

David
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