Mayo Diagnosis - BFS = Potassium Channel Dysfunction

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Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby BFSBurger on May 13th, 2013, 1:07 pm

In one individual. Once again, fitting along the lines of the theory that BFS is part of the Potassium Channel Disorders / Neruomyotonia, etc ... our own GHayes gave me permission to post that he went to Mayo, and they concluded he has a "Potassium Channel Disorder" causing his symptoms. Unfortunately, Mayo failed to clarify what "dysfunction" actually means. And that would be the key. Knowing why, months later, it continues ... is important. Is it autoimmune, where the immune system continues to agitate and enflame symptoms? Maybe. I just don't know. But its not "stress". PERIOD.

Which brings me back to Dr. Angela Vincent's comments that BCFS and BFS are just milder forms of neuomyotonia - potassium channel malfunction.

Translation: You are not imagining things. You are not CAUSING your own disorder. Your problem is not Stress. Stress just agitates the disorder. You are not at fault for whats happening. You didn't initiate this. You don't have ALS. You don't have Multiple Sclerosis. The root cause of your problems is not your inability to relax. So please "Sticky that to your brain" ... as now an expert of 35 years, and Mayo themselves have acknowledged that this is a *dysfunction* of potassium channels which affect misfiring of our muscle fibers.

Im calling that a diagnosis.

Are there treatments? Yes. If its autoimmune - then calming the immune system would be the solution. Stress reduction does this! Avoiding inflammatory foods, especially gluten does this. If its not autoimmune? Anticonvulsants. Phenytoin, etc. Autoimmne? Prednisone. IVIG treatment. All with side effects. Doing nothing? Thats your choice. Will you be able to find a doctor who will have a clue about any of this and get you going on a treatment? Unlikely. None of them seem to know a thing about potassium channel disorders and even fewer know what Neuromyotonia is. More significantly, no doctor will prescribe a treatment without an official diagnosis. Usually. Doctors require "full blown disease" to get off their *sses and act on the patients behalf. But that's the culture of the failed medical system. Anyone who is not in a "disease state" doesn't get preventive treatment. If you are "pre-disease" you are sent home "healthy" which is of course - utter nonsense.

Acquired Neuromyotonia and Acquired Potassium Channel dysfunction can come from anything. Literally. There are published studies of people getting it from wasp stings. Vaccine injections. HPV vaccinations. Thymus abnormalities. Just like we say about BFS - it can be "post-viral" and it can be "post medication" / antibiotics as well. I have yet to understand whether its always "autoimmune" or whether its a chemical imbalance that just never rectifies itself (i find the latter to be extremely unlikely) ... but there seems to be some evidence that various environmental factors can trigger an autoimmune response to potassium channels and cause misfiring of muscles.

Without treatments? Avoid immune boosting supplements. Avoid immune boosting foods. Avoid histamine producing foods (Pastas, Noodles, Breads, Grains, GLUTEN). Stick to chickens and potatoes and veggies as much as you can. Avoid stimulants like the plague: Caffeine, Coffee, Energy Drinks, Green Tea, White Tea, etc... Avoid taking too much Vitamin D as it becomes an immune steroid after a certain level (i stay at 2,000 IU or less per day max). Stress reduction.

As always - i am still reading and learning. And may tweak my conclusions as the months go by. But at this stage - for ME - I am wholeheartedly settled on the need to suppress/calm my immune system, as the solution to this disorder. However there are treatments for disorders like this too, and I will have some conversations with either Dr Vincent, or a Neuromuscular Expert here in Miami soon about the options. I doubt anyone will approve IVIG for someone who has mild neuromyotonia, but you never know.

My theory goes something like this:

If a percentage of people (lets say 30%) with full-blown Neuromyotonia are cured by treatments (prednisone, Phenytoin, IVIG, anticonvulsants, etc), how many more of us would be cured by the same treatments, as we are nowhere near as severe?
If 30% of NMT patients are *cured* by this, would 80% of us be cured? Its a valid question.
There are side effects. But maybe we would need only smaller doses, for shorter durations.

By the way autoimmune Neuromyotonia is referred to as an "Inflammatory Immune Disorder". The meds I took last year prior to onset are well documented to cause "Inflammatory Immune Disorders" (IRIS). So this makes some sense - for my situation at least. Wish I'd never taken those meds. Been talking to a guy who also developed an immune inflammatory syndrome after the same medications. His ended up being Sarcoidosis. He has begged me numerous times to "just try" prednisone. I've been too afraid. Still debating...

BFSB
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby mwagner on May 13th, 2013, 1:39 pm

Prednisone is a steroid, right? I would imagine that would have side effects and dangers of its own. Depending on how severe your symptoms are, I wouldn't recommend a steroid unless you really need it. I would rather deal with my twitching than a compromised immune system, that can even go down the route of causing lymphomas, etc. If you're doing well with your current protocol, I wouldn't go down that road. It's different if you had something like rheumotoid arthritis, where you really had to choose between the risks of a steroid and horrible pain and dangers to your body from the disease.

But, that being said - the times I have had the least twitching in the past almost two years has been when I've been sick strangely enough. Like when my immunity is down. And, I have had a very strong immune system, where my kids will get sick and I won't.

I've also taken Astragulus for the past few years, to boost my immune system. While it has definitely worked, I wonder if I should take it. I take it because I don't like to get the flu shot anymore. What do you think about vaccines?

Anyway, I really appreciate your input and advice. I have also wondered whether sleep deprivation can cause this. I have terrible sleep issues where I sleep restlessly, dream a lot, don't get much delta sleep - sort of like the issues those with fibromyalgia have with sleep. This also started after I had my kids, and endured the worst sleep deprivation of my life. Note how many people here are new parents.

Thanks for contributing these theories to the board. I have cut out caffeine and it appears to help a little, but bad sleep and no caffeine make my life challenging to say the least.

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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby Seepi27 on May 13th, 2013, 1:43 pm

BFSBurger wrote:In one individual. Once again, fitting along the lines of the theory that BFS is part of the Potassium Channel Disorders / Neruomyotonia, etc ... our own GHayes gave me permission to post that he went to Mayo, and they concluded he has a "Potassium Channel Disorder" causing his symptoms. Unfortunately, Mayo failed to clarify what "dysfunction" actually means. And that would be the key. Knowing why, months later, it continues ... is important. Is it autoimmune, where the immune system continues to agitate and enflame symptoms? Maybe. I just don't know. But its not "stress". PERIOD.

Which brings me back to Dr. Angela Vincent's comments that BCFS and BFS are just milder forms of neuomyotonia - potassium channel malfunction.

Translation: You are not imagining things. You are not CAUSING your own disorder. Your problem is not Stress. Stress just agitates the disorder. You are not at fault for whats happening. You didn't initiate this. You don't have ALS. You don't have Multiple Sclerosis. The root cause of your problems is not your inability to relax. So please "Sticky that to your brain" ... as now an expert of 35 years, and Mayo themselves have acknowledged that this is a *dysfunction* of potassium channels which affect misfiring of our muscle fibers.

Im calling that a diagnosis.

Are there treatments? Yes. If its autoimmune - then calming the immune system would be the solution. Stress reduction does this! Avoiding inflammatory foods, especially gluten does this. If its not autoimmune? Anticonvulsants. Phenytoin, etc. Autoimmne? Prednisone. IVIG treatment. All with side effects. Doing nothing? Thats your choice. Will you be able to find a doctor who will have a clue about any of this and get you going on a treatment? Unlikely. None of them seem to know a thing about potassium channel disorders and even fewer know what Neuromyotonia is. More significantly, no doctor will prescribe a treatment without an official diagnosis. Usually. Doctors require "full blown disease" to get off their *sses and act on the patients behalf. But that's the culture of the failed medical system. Anyone who is not in a "disease state" doesn't get preventive treatment. If you are "pre-disease" you are sent home "healthy" which is of course - utter nonsense.

Acquired Neuromyotonia and Acquired Potassium Channel dysfunction can come from anything. Literally. There are published studies of people getting it from wasp stings. Vaccine injections. HPV vaccinations. Thymus abnormalities. Just like we say about BFS - it can be "post-viral" and it can be "post medication" / antibiotics as well. I have yet to understand whether its always "autoimmune" or whether its a chemical imbalance that just never rectifies itself (i find the latter to be extremely unlikely) ... but there seems to be some evidence that various environmental factors can trigger an autoimmune response to potassium channels and cause misfiring of muscles.

Without treatments? Avoid immune boosting supplements. Avoid immune boosting foods. Avoid histamine producing foods (Pastas, Noodles, Breads, Grains, GLUTEN). Stick to chickens and potatoes and veggies as much as you can. Avoid stimulants like the plague: Caffeine, Coffee, Energy Drinks, Green Tea, White Tea, etc... Avoid taking too much Vitamin D as it becomes an immune steroid after a certain level (i stay at 2,000 IU or less per day max). Stress reduction.

As always - i am still reading and learning. And may tweak my conclusions as the months go by. But at this stage - for ME - I am wholeheartedly settled on the need to suppress/calm my immune system, as the solution to this disorder. However there are treatments for disorders like this too, and I will have some conversations with either Dr Vincent, or a Neuromuscular Expert here in Miami soon about the options. I doubt anyone will approve IVIG for someone who has mild neuromyotonia, but you never know.

My theory goes something like this:

If a percentage of people (lets say 30%) with full-blown Neuromyotonia are cured by treatments (prednisone, Phenytoin, IVIG, anticonvulsants, etc), how many more of us would be cured by the same treatments, as we are nowhere near as severe?
If 30% of NMT patients are *cured* by this, would 80% of us be cured? Its a valid question.
There are side effects. But maybe we would need only smaller doses, for shorter durations.

By the way autoimmune Neuromyotonia is referred to as an "Inflammatory Immune Disorder". The meds I took last year prior to onset are well documented to cause "Inflammatory Immune Disorders" (IRIS). So this makes some sense - for my situation at least. Wish I'd never taken those meds. Been talking to a guy who also developed an immune inflammatory syndrome after the same medications. His ended up being Sarcoidosis. He has begged me numerous times to "just try" prednisone. I've been too afraid. Still debating...

BFSB


If it's a toss-up between continuing to twitch benignly and using steroids, I'd prefer the former.

Re: the potassium channel hypothesis, it's just that - a hypothesis. An interesting one, but a hypothesis nonetheless. I have also heard that benzodiazepines and K-channels interact, and I am wondering whether or not this accounts for the twitching that one often gets, as I believe I have, following withdrawal from benzodiazepines.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby garym on May 13th, 2013, 1:58 pm

I was told 10 years ago by two prominent neuromuscular specialists that MY fasciculations were NOT caused by stress/anxiety but were indeed exacerbated by them. I was also told that k-channelopathy was most likely the cause and was tested for antibodies which came back negative......I have, over the past several years been on medrol dose packs a couple of different times due to allergic reactions to poison ivy (i get the crap really bad) and have taken prednisone a few times also. Maybe I just wasn't on them long enough, but I didn't experience any improvement of my bfs while taking them......all that said, the one thing I've learned after all these years is that we are all different and what works for one might not for others and vice versa.

Take care,
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby BFSBurger on May 13th, 2013, 2:25 pm

The "hypothesis" shouldn't be Poo-Poo'd ... its funny to me how people dont seem to want answers. They are presented with answers and they still kind of... try to dissolve them ... make them sound unlikely. On the contrary, the potassium channel disorder theory isn't unlikely. Its very likely. Twitchy did the same thing: "Dr Vincent only said its 'probably' related" .. :D ... you guys crack me up. Is there something you want it to be, instead of something small like a potassium channel disorder? I mean there are hundreds of diseases out there you could pick from. Ill go with this one, given the evidence backing the hypothesis. Lots of things we consider true are still "technically" hypotheses. Not surprised Gary was told Potassium Channel disorder nearly 10 years ago.

To Gary: You're right. Even in the realm of full blown Neurmyotonia, one person will see nothing on Predisone and IVIG, but they'll see dramatic (and permanent improvement) on one of the other meds. Another person will get nothing from IVIG yet be cured by Prednisone. There's even a study of a cat who acquired this condition (its very common in animals) that had no benefit from Pred, but marked improvement from Phenytoin. Everyone is different.

I guess its always good to note that even with full blown Acquired Neuromyotonia, there are a percentage of people who simply "resolve" after months/years.
Which again, matches this site exactly. Plenty of evidence supporting the hypothesis.

The thing that I can't shake is that there is a possibility of huge improvement, and even cures, with treatment. Tough call.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby Seepi27 on May 13th, 2013, 2:59 pm

BFSBurger wrote:The "hypothesis" shouldn't be Poo-Poo'd ... its funny to me how people dont seem to want answers. They are presented with answers and they still kind of... try to dissolve them ... make them sound unlikely. On the contrary, the potassium channel disorder theory isn't unlikely. Its very likely. Twitchy did the same thing: "Dr Vincent only said its 'probably' related" .. :D ... you guys crack me up. Is there something you want it to be, instead of something small like a potassium channel disorder? I mean there are hundreds of diseases out there you could pick from. Ill go with this one, given the evidence backing the hypothesis. Lots of things we consider true are still "technically" hypotheses. Not surprised Gary was told Potassium Channel disorder nearly 10 years ago.

To Gary: You're right. Even in the realm of full blown Neurmyotonia, one person will see nothing on Predisone and IVIG, but they'll see dramatic (and permanent improvement) on one of the other meds. Another person will get nothing from IVIG yet be cured by Prednisone. There's even a study of a cat who acquired this condition (its very common in animals) that had no benefit from Pred, but marked improvement from Phenytoin. Everyone is different.

I guess its always good to note that even with full blown Acquired Neuromyotonia, there are a percentage of people who simply "resolve" after months/years.
Which again, matches this site exactly. Plenty of evidence supporting the hypothesis.

The thing that I can't shake is that there is a possibility of huge improvement, and even cures, with treatment. Tough call.


I didn't poo-poo it: I merely said that it's a hypothesis, that's all. It may be the answer; it may not be. The fact remains that it is inconclusive, and my point was simply that we should exercise caution in deeming ourselves sufferers of a K-channel dysfunction, with all the ramifications - medication-wise - that this may have.

And I don't want it to be anything - anything but benign, that is. If it's benign, let it be what it is.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby BFSBurger on May 13th, 2013, 5:56 pm

If its caused by an autoimmune condition then "letting it be what it is" isn't wise in my opinion. As the folks on the NMT forum will admit, earlier treatment = better outcome. If we do have a mild form of NMT then the same rule would apply to us. Read the NMT wiki page. It even states: "This disorder can range from mildly annoying to disabling". There are people on this board far past "mildly annoying" symptoms - yet NMT gets that mild? Yes. .... it does!

With nearly every condition on earth... early intervention improves outcome. I consider it to be unwise to sit around and do nothing. But that's just me.

The fact that foods induce worsened symptoms for people with BFS, i believe takes the hypothesis of autoimmune influence a little closer towards fact. Celiac-like symptoms are common for those with diagnosed NMT and they are common for many here, including myself. And it makes sense. Immune function is heavily influenced by the gut, and when there is immune dysfunction going on in the body, food will be a trigger for neuropathies and muscular disorders.

If this was just an ion disorder at the muscle level under the skin, eating a pizza wouldn't cause double the twitching, followed by my foot aching and burning. I wouldn't get neuropathy and increased twitching after eating Lasagna. I wouldn't down some Gluten and regret it for three days afterwards. Likewise, avoiding those things for 2 weeks wouldn't get me almost to zero symptoms. I can take immune boosting supplements like Lysine, Cats Claw, Astralagus, and even something called ProBoost Thymus Extract - and within 30 minutes I will be a pitter-pattering mess when there was total silence prior. I've done nothing for the last 7 months but carefully evaluate each and every reaction with tests and repeated tests with foods and supplements. I had my immune functions tested as well. My CD8 count is high, as are my Lymphs. Both associated with autoimmunity in the absence of infection. It may be very subtle, or minor for all of us (and thank God for that), but it may still be there. And I still believe if there was some way to knock it down - maybe it might help. Lifestyle changes can do that.

I still have my appointment with Dr. Klimas - an immunologist - in 2 weeks. She is known for doing complete immune function testing. If there is any autoimmunity or hyperactivity going on, she will identify it and I will have proof on paper. If there isn't, then all the better. But all signs for me currently point to this.

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viewtopic.php?f=3&t=19128
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby TwitchyMark on May 13th, 2013, 7:17 pm

So what should I tell people I most likely have? If I tell them BFS, they go online and see the top cause being anxiety and they immediately think it was all in my head all along. Most people do not see syndromes as being as serious as a disease. Should I say it is neurological and dysautonomic symptoms caused by an indeterminate autoimmune disorder? Peripheral Nerve Hyperexcitability? Again, most people associate "nerves" with anxiety or not handling stress well. I told a neighbor I had a problem with my nerves and he related how he would get jumpy and startled easily. I tried to explain that wasn't what I meant. Many just don't have the willingness to try to understand something that doctors can't even understand. I just want to be taken seriously especially if my symptoms ramp up again. Some are truly debilitating and one cannot simply move on and live a normal life.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby garym on May 13th, 2013, 7:58 pm

TwitchyMark wrote:So what should I tell people I most likely have?


I tell people i have a "benign muscle and nerve disorder"......rarely do i ever mention bfs to anyone except a doctor.

take care,
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby fargo on May 15th, 2013, 9:46 am

BFSBurger wrote: its funny to me how people dont seem to want answers. They are presented with answers and they still kind of... try to dissolve them ... make them sound unlikely.


people play different games , with themselves and with the ones that are near them.. sometimes they want to achieve certain psychological effects, intentionally or not, which they might profit from / there is available literature on this/ so I wouldn't worry BFSburger :)

you 're doing a great job here and I can only hope you will keep posting the results of your 'research' which I can only be thankful for :)
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby SecretAgentMan on May 15th, 2013, 10:51 am

Many times people do not want new information, but rather they want their beliefs validated. We must look in the mirror and recognize this tendancy within ourselves, because often we do not stop to consider the fact that we are viewing things through our own filter of beliefs (and often believe we are right). It can be difficult for us to consider the possibility that everyone else's perspective may be just as valid as our own. To simplify things our mind trys to see the universe as black or white, when in reality it may exist in infinite shades of grey.

I am all for the bringing up and discussing of new ideas that may help people find answers and move on with their lives, but I urge caution in the pushing of these ideas as absolute truths. I beleive we can make recommendations and share our unique perspectives, but must respect the free will choice of others to make their minds up for themselves. For this reason I believe we can disagree, but I do not see it as my place to tell someone they are wrong.

That's my 2 cents to keep this discussion positive and constructive.
Last edited by SecretAgentMan on May 15th, 2013, 11:10 am, edited 1 time in total.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby garym on May 15th, 2013, 11:07 am

SecretAgentMan wrote:
I am all for the bringing up and discussing of new ideas that may help people find answers and move on with their lives, but I urge caution in the pushing of these ideas as absolute truths. I beleive we can make recommendations and share our unique perspectives, but must respect the free will choice of others to make their minds up for themselves. For this reason I believe we can disagree, but I do not see it as my place to tell someone they are wrong.

That's my 2 cents to keep this discussion positive and constructive.


I 100% agree with the above comments.

Gary
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby Seepi27 on May 15th, 2013, 1:14 pm

fargo wrote:
BFSBurger wrote: its funny to me how people dont seem to want answers. They are presented with answers and they still kind of... try to dissolve them ... make them sound unlikely.


people play different games , with themselves and with the ones that are near them.. sometimes they want to achieve certain psychological effects, intentionally or not, which they might profit from / there is available literature on this/ so I wouldn't worry BFSburger :)

you 're doing a great job here and I can only hope you will keep posting the results of your 'research' which I can only be thankful for :)


God, everything you people write is so dramatic and flamboyant, it just makes me want to set myself on fire!!

(Apologies to Lucille Bluth)
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby johnnythejet on May 15th, 2013, 3:55 pm

garym wrote:
SecretAgentMan wrote:
I am all for the bringing up and discussing of new ideas that may help people find answers and move on with their lives, but I urge caution in the pushing of these ideas as absolute truths. I beleive we can make recommendations and share our unique perspectives, but must respect the free will choice of others to make their minds up for themselves. For this reason I believe we can disagree, but I do not see it as my place to tell someone they are wrong.

That's my 2 cents to keep this discussion positive and constructive.


I 100% agree with the above comments.

Gary


Ditto. 1000%
Last edited by johnnythejet on May 15th, 2013, 4:05 pm, edited 1 time in total.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby johnnythejet on May 15th, 2013, 3:57 pm

Seepi27 wrote:
fargo wrote:
BFSBurger wrote: its funny to me how people dont seem to want answers. They are presented with answers and they still kind of... try to dissolve them ... make them sound unlikely.


people play different games , with themselves and with the ones that are near them.. sometimes they want to achieve certain psychological effects, intentionally or not, which they might profit from / there is available literature on this/ so I wouldn't worry BFSburger :)

you 're doing a great job here and I can only hope you will keep posting the results of your 'research' which I can only be thankful for :)


God, everything you people write is so dramatic and flamboyant, it just makes me want to set myself on fire!!

(Apologies to Lucille Bluth)

Haha, genius. Season 4 is almost here, Colin!
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

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