Mayo Diagnosis - BFS = Potassium Channel Dysfunction

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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby Seepi27 on May 16th, 2013, 1:57 pm

johnnythejet wrote:Haha, genius. Season 4 is almost here, Colin!


I have never awaited anything as eagerly as I await Season 4 :)
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby dARR on May 16th, 2013, 2:05 pm

Not even a clean emg report? Wow guys i gotta watch this show!
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby chicagobfs on May 20th, 2013, 12:21 am

I took one pill of steroid with strep throat infection and I stopped twitching for 3 days
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby SuziQ on May 20th, 2013, 7:08 am

chicagobfs wrote:I took one pill of steroid with strep throat infection and I stopped twitching for 3 days


I was given a high dose course of steroids and it didn't help my symptoms, whatsoever. In fact, my blood sugar rose so high, the doctors feared I'd have diabetes for the rest of my life.

These medications have their place, but they ought not be taken heedlessly. If I had to choose between diabetes and BFS, that choice would be a no-brainer for me.

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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby andrewbfs on May 20th, 2013, 10:50 am

dARR wrote:Not even a clean emg report? Wow guys i gotta watch this show!

Where can I watch this show -- is it on the Potassium Channel?

(Sorry, I could not resist...)
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby dARR on May 20th, 2013, 12:25 pm

andrewbfs wrote:
dARR wrote:Not even a clean emg report? Wow guys i gotta watch this show!

Where can I watch this show -- is it on the Potassium Channel?

(Sorry, I could not resist...)


Hahahahaha Simply brilliant!!!!
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby dARR on May 20th, 2013, 12:25 pm

andrewbfs wrote:
dARR wrote:Not even a clean emg report? Wow guys i gotta watch this show!

Where can I watch this show -- is it on the Potassium Channel?

(Sorry, I could not resist...)


Hahahahaha Simply brilliant!!!!
He who fights with Monsters might take care lest he thereby become a Monster and if you gaze long into the Abyss the Abyss also gazes into you. Fredrich Nietzche, Beyond Good and Evil
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby aztwitchy on May 20th, 2013, 2:46 pm

I think ion channel dysfunction is much more common than we think. It would at least be a solid explanation why lots of people despite counseling and brain medication continue to twitch away for 5, 10, 20, 30+ years....

the difficulty is finding a doctor educated in this area and has at least some clinical experience treating patients. you then have a decision to make regarding medications and if your twitching\cramping is affecting you enough to take them and deal with consequences\side effects.

potassium and sodium channel dysfunction is at least something everyone who is dealing with severe symptoms should at least bring up with their doctor....its probably more worthwhile than having your 5th, 6th, or 7th EMG
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby garym on May 20th, 2013, 2:53 pm

aztwitchy wrote:potassium and sodium channel dysfunction is at least something everyone who is dealing with severe symptoms should at least bring up with their doctor....its probably more worthwhile than having your 5th, 6th, or 7th EMG


I agree with this completely.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby chrissi on May 20th, 2013, 3:51 pm

I agree with this. For the persons that do not follow the " typical " BFS pattern with a big relief of symptoms after a while , and in spite of a proper stress and anxiety management, this is a good idea. Especially if the sx are very severe, so you would be willing to risk those side effects that meds bring with them. In my very bad pain days, I would have taken anything to get rid of thet terrible pain and the burning all over, because it woud not even let me sleep. But like in many BFS cases and with the help of a good doctor, I got rid of it after a while. And glad I did not try steroids. I have been tested for channelopathies in hospital twice, so I knew this was likely not my problem. So it was not surprising that I did not get rid of my BFS by Prednisone ( I got for something else). I have been twitching a lot before I got full blown BFS and 9 Months of IVIGs ( Octagame) did not change it. For sure I would not have done those for twitching and some minor pain, they have impressive side effects. My prize was a child so tat was OK but it was hard.
So I would always suggest patience, getting rid of anxiety and getting on with your life as a first plan. This will usually lead to a definate improvement of sx. If you still feel like crap with very severe hard twitching ( Bobajojo Style Twitches) and maybe even cramping and lots of pain after the typical year although you feel totally relaxed ( anxiety wise) for months, I would look for other ways to treat this problem. Looking for a channelopathy is one of them. There are many possible causes for BFS, and this is one of them.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby chicagobfs on June 17th, 2013, 12:38 pm

So I broke my rule and read about Neuromyotonia. I have to say that I have exactly the same symptoms as described with this disorder. Still, the treatment seem to be the same ( besides steroids and plasma exchange) as with BFS so I'm not sure how being diagnosed with Neuromyotonia instead of BFS would make a difference?
I posted above that once by taking one pill of steroids all my symptoms disappear what would that suggest? I'm going to see neurologist one again and this time I will ask him why does he feel comfortable to diagnose me with BFS but not with Neuromyotonia.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby seventhcandle on June 28th, 2013, 7:06 pm

I have to agree with BFSBurger that what many of us have is a Potassium Channel Dysfunction or even a Sodium Channel Dysfunction. All of my problems began just over a year ago from just four sleeping pills, three of which were known sodium channel blockers. I think I had an immune system response to them and that got the twitching and jerking going, which hasn't stopped since.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby BFSBurger on June 28th, 2013, 7:15 pm

Shoot. I talk a lot but I am no expert.

Im probably wrong. Probably have been wrong the whole time.

But Ill keep looking, and tossing ideas out there.

Seventh ... how have things been for you? You were, hands down, having the most difficult time of all of us for awhile there, in my opinion. As far as extreme symptoms.
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 seventhcandle on June 28th, 2013, 7:22 pm

BFSBurger wrote:Shoot. I talk a lot but I am no expert.

Im probably wrong. Probably have been wrong the whole time.

But Ill keep looking, and tossing ideas out there.

Seventh ... how have things been for you? You were, hands down, having the most difficult time of all of us for awhile there, in my opinion. As far as extreme symptoms.


Still twitching like a mofo, but doing better in general. It gets a little easier to deal with over time, as I have made many lifestyle changes reminiscent of what you've done with yours. I posted a one year update which goes into more detail. A pleasure to hear from you, Kevin - keep up the good work! :)
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby BFSBurger on July 2nd, 2013, 7:26 pm

Seventh, having spoken to you offline, and knowing what you were going through, I am really glad you found the strength to keep going, and that you didn't throw in the towel. Losing spouses is something that I know has happened to others on here, so you are in good company. I truly believe that there is an element to this disorder which quadruples our reaction to normal anxiety. Both on the physical level (body's reaction to adrenaline and cortisol), and on the purely emotional level (a significantly magnified anxiety response that seems nearly out of control compared to our "normal" state). This can cause problems with relationships I am sure. I really do have reason to believe that either our immune system, CNS, or some sort of invader directly affects our brains with this disorder, and truly does make us an emotional wreck. I wish that could be proven so people don't blame themselves for their sudden inability to handle the stress of this disorder. But I am nearly 1,000% confident that this is the case. I have had so many strange episodes of crying, and utter despair, that I have surprised myself. I have been through a lot in my life, and never had such extreme reactions to things. Something has changed. I hope if you blame yourself at all for her giving up on you, you will put that blame in the context that something has been modified - even in your personality, with all of this. I don't believe for a minute that its just "muscular" and nothing more.

-B-
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

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