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AboutBFS.com • View topic - My Story (Very long, but meant to help)

My Story (Very long, but meant to help)

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Moderators: JohnV, Arron, garym

Postby Jennhaz on November 14th, 2007, 10:15 am

I remember asking my Dr. if anxiety caused this, he laughed and said, NO. Now if you ask a shrink they will tell you the opposite. Reading that list alot of them describe how I feel when I AM HAVING a panic attack, there and then, not after it. Yes stress can do some things to the body, but I am sure if you send your counselors some of the videos of people's twitches on here, where there whole muscle contracts they will probably say, hmmm, maybe not anxiety. I can tell you that my ratchety muscle and bouncing of my hand is not anxiety. Like I said before if this is to be true that we have so much anxiety and are adrenline glands are crazy then I think it would show up in the bloodwork, at least a little bit. I mean if my body is that out of whack from anxiety.

This list, how do they know that maybe the patients do not have anything else going on with them but have anxiety because of the symptoms from the illness.

I think more and more that this is autoimmune. Man just think about all the people in the world with anxiety, we would all be a mess by the looks of that list.

I was dx with GAD also but of course never dx until AFTER I was sick which what was producing my GAD. THis is just silly..Jenn
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Postby lucy on November 14th, 2007, 10:56 am

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Postby whataprettyworld on November 14th, 2007, 11:20 am

Reminds me of Spike Milligan's epitath on his gravestone.

I TOLD YOU I WAS ILL
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Postby j7m on November 14th, 2007, 11:27 am

Perhaps we all just need a hypothalamus reboot...
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Postby kevintwister on November 14th, 2007, 12:41 pm

Well folks, I am living proof that anxiety can cause this. I came here to help not start and be involved in a debate. By addressing the underlying (some hidden) anxiety issues that I had it went away. If I had some other disease that wouldn't have occured. The facts are what they are, been there and done that. I was told that if I would address all the issues I had, accepting that I do not have any sinister disease that these symptoms would eventually fade away. Well, guess what? A year later (after a LOT of hard work) I am symptom free. I don't know what more proof any of you need. Unless you just don't believe me.

For someone to come in here and say this is not the case is doing a SERIOUS disservice to those here that do have this because of "nervous system burnout" which I am convinced is the majority by reading the types of posts here. Now that I know what I know about this condition I can just "hear" it in these posts.

I know one thing is fact. If I still felt that I had some sinister disease causing this I wouldn't be any better today than I was a year ago. That much I do know. I would still be trapped in this thing.

To anyone reading this, if you're someone that tends to worry about your health, run to the computer to look up symptoms you have on the internet, think the worst when you have a symptom, are hypersensative about your body as someone put it, think about your symptoms every day, often doubt your doctor dx, etc., if you are any ONE of those things then I am convinced there is a 99.99% chance that you are suffering from this for the same reason I was.

I always get a chuckle out of one poster on that anxiety site. He said his doctor gave him a presciption that he said would help ease his symptoms. He said when he read it it just said "Unplug your computer and keep it off".

Good folks I am done here. One of my recovery strategies was to do that exact thing and stay off of these sites. Anxiety tends to be contageous so to speak. I only came back here to thank some folks that thanked me for my initial post. I am glad it was helpful to them since that was the purpose. However it's not good for me to be debating this, I can already feel it affecting me. I didn't sleep well lastnight after thinking about this all day yesterday. I can tell I was getting "revved up" again. So far no buzzing or twitching but I don't want to push my luck. I used to be able to bring that crap back just by thinking about it.

I wish you all the best. If anyone ever has any specific questions about how I recovered feel free to PM me. I am notified by email when you do that. Other than that I am going to continue to do what made me better and that includes staying off these types of sites. I consider this chapter of my life closed.
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Anxiety

Postby Richard on November 14th, 2007, 1:54 pm

I would like to explore this further in my own life. Please hear me out.

I remember years ago when I was in Jr. College. I read Plato and other philosphers. Reading these books made me think that I have very little control in my life and did not know what I was doing.

I could not sleep properly for a few days. It made me full of anxiety.

Now when I went for back surgery, the interesting thing was my symptoms by back surgery patients were not so bad. I could bend without pain. My problem was numbness. I could not feel parts of my leg and feet (most of that came back). But I was full of anxiety especially for the first few months.

My mom is an eye twitcher. It might happen all the time. I really do not pay attention. But she is constantly worried about her daughters (my sisters), and my sister's kids. Is there an anxiety relationship here?

My son's biggest problem at school is he get anxious and then either disrupts the class or is unable to focus on getting his schoolwork done until he settles down.

My son is 9, he is a lot better now. I tell him he needs to stay calm and in control and if he has problems just to bring them home and I will help him.

So my point is maybe there is something to this anxiety thing. And maybe it runs in my family. Maybe if I can get ahold of this anxiety I can at least decrease my symptoms to the point of where I can ignore them.

So I think that this poster is writing is at least some food for thought.

-Richard
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Postby lucy on November 14th, 2007, 2:17 pm

Richard,
It runs in my family too- I have 3 other twitchers in the family/relatives. Not so uncommon-
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Postby lucy on November 14th, 2007, 2:24 pm

Kevintwister,

Thank you so much !!!

I think I need to break from here too, but I will always be grateful to all who helped and supported me through my earlier fears which were quite frightening.

God bless everyone here! :D

I hope to meet you all one day (in the much much distant future :wink: ) in a better place. But till then, may you all find great joy in the little miracles of every day here in this world.
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Postby Angie on November 14th, 2007, 2:38 pm

Personally, I am glad for whatever helps people deal with a difficult condition, whatever the cause and, for the most part, whatever the cure. I knew in my case that there was a physcial cause to my symptoms and, even if it's not-well known and can't be cured, at least it's 'benign' and I know what I'm dealing with.

We all have anxiety, some of us more than others, that affects our physical and mental health in different ways. I will say that since I found a neurologist who is familiar with my condition and who is treating me with anticonvulsants to control my symptoms, my anxiety level is almost nonexistent. The pain I was in due to cramping was keeping me up at night, now it's not. I intend that to help as much as maybe kevintwister intends with his post.

Judging from what was on list of 'anxiety' symptoms however, I think most people will at least briefly experience many of those things throughout their lives, or even on a daily basis, if they are lucky enough to have a pulse. Giddyness ranks high on my list everyday symptoms anyway. If kevintwister thinks controling his anxiety cured him, who am I to disagree? I'm just of the opinion that, based on what I've read and heard, that simply will not be the case for most people who develope peripheral nerve hyperexciteability. I can post some info by some more researchers of BCFS/BFS/PNHE if anyone else is curious.

And I really like that quote whataprettyworld:

"Reminds me of Spike Milligan's epitath on his gravestone.

I TOLD YOU I WAS ILL"

Gave me a good laugh. Best medicine there is (in combination with neurontin anyways :lol: )
Last edited by Angie on November 14th, 2007, 9:47 pm, edited 1 time in total.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby Tui on November 14th, 2007, 4:32 pm

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Postby j7m on November 14th, 2007, 4:34 pm

"Idle minds are the devil's playground"
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Postby Nancy on November 15th, 2007, 12:24 am

Just a couple of thoughts...BFS is a SYNDROME not an illness or disease. The hypothesis that it is autoimmune is not yet proven but is simply one potential explanation for its genesis. We can be sure though that something in the body is haywire and if anyone here has not noticed at least a connection between anxiety level and symptom frequency and intensity, I'd be shocked. :shock:

It is possible that we each had some sort of vulnerability or predisposition to something like BFS and given some final stressor, be it viral, situational, low dietary intake of calcium or magnesium, or internet accessed :wink: ...what resulted was twitches, pain, floaters, panic, multiple doctor visits and so forth. There are very few medical diagnoses (albeit there are indeed some) that do not have an emotional component both in its etiology and/or in its progression.

Each one of us has chosen certain ways to handle it all and with varying degrees of success. Most of us are probably generally keeping our eyes and ears open for additional ways to minimize symptoms. Kevin says his symptoms are totally gone. I for one am curious about that and can't see why he might not have something to teach everyone no matter what the root cause for BFS may be. Kevin is what I would call a "single case study" and until a large sample is diagnosed and treated no one can state with empirical certainty what is a "cure" or successful treatment of BFS (or anxiety disorder, for that matter) or not. In science, claims of success rates have to be quantifiable (meaning "I feel better" is not enough to qualify someone as a "success") but we can still potentially learn from the anecdotal evidence of others as they conduct their own "trials".

Finally, however you want to label it, obsessing about sinister diseases and refusing to take solace in clinical findings unsupportive of disease or syndromes seems indicative of something a little awry in our thinking and coping, doesn't it? And such catastrophic thinking is highly bound to cause anxiety and depression. Our bodies react to such negative beliefs AS IF THEY ARE TRUE and the resultant adrenaline and cortisone rush through our systems will indeed cause a multitude of physical symptoms like racing heart, trembling, choking sensation, shortness of breath, dizzines, headache, chest and muscle pain, etc. If chronic, it can contribute to the development of potentially life-threatening things like cardiovascular disease and certain cancers. Whether you have a biological or psychological or synergistic conceptualization of the syndrome of BF, it seems educating one's self on both the physical and emotional aspects and "treatment" for both would make great sense.

Let's celebrate the "success stories" and keep working on being one ourselves to the greatest extent possible.


[/i]
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Postby Angie on November 15th, 2007, 10:00 am

From http://www.pnhe.info/

Exerpts from one study:

"Brain, Vol. 125, No. 8, 1887-1895, August 2002
© 2002 Guarantors of Brain
Phenotypic variants of autoimmune peripheral nerve hyperexcitability
Ian K. Hart1, Paul Maddison2, John Newsom-Davis2, Angela Vincent2 and Kerry R. Mills3
1 Neuroimmunology Group, University Department of Neurological Science, Walton Centre, Liverpool, 2 University Department of Clinical Neurology, Institute of Molecular Medicine, Oxford, 3 Department of Neurophysiology, King’s College Hospital, London, UK

Generalized peripheral nerve hyperexcitability (PNH) usually presents as spontaneous and continuous muscle overactivity.The clinical features of the motor nerve dysfunction are diverse and include cramps, muscle twitching (fasciculations or myokymia), stiffness, pseudomyotonia (delayed muscle relaxation after contraction) and pseudotetany (spontaneous or evoked carpal or pedal spasm, or Chvostek’s sign) (Isaacs, 1961; Mertens and Zschocke, 1965; Tahmoush et al., 1991). Some patients experience paraesthesias and numbness implying sensory nerve involvement, or hyperhydrosis that might represent autonomic dysfunction or be secondary to muscle overactivity. There may also be associated CNS disorders such as mood change, sleep disorder or hallucinations(reviewed in Newsom-Davis and Mills, 1993; Serratrice and Azulay, 1994; Barber et al., 2000; Liguori et al., 2001).

Associated immune-related diseases
Autoimmune disorders occurred more frequently than would be expected by chance in both groups. Myasthenia gravis was present in 21% of group A and 12% of group B (Table 3). Manifestations of muscle overactivity appeared at the same time as myasthenia in six out of 11 patients and between 4 to 34 years after the onset of myasthenia in the other five patients

Psychiatric features
Eleven group A patients (26%) reported psychiatric symptoms—most commonly isolated mild personality change, insomnia or irritability. One patient also had visual hallucinations and one developed a delusional state. Five of them had raised serum VGKC antibody titres and the two patients with the highest serum titres in our series of 60 patients were the two group A patients with the most florid psychiatric symptoms. Eight of these 11 group A patients who underwent CSF analysis had a mildly raised total protein, but no oligoclonal bands were detected.

A similar proportion of group B patients (22%) reported mild psychiatric symptoms. One of these patients also had vivid dreams and only in this patient was the VGKC titre raised.

Although overall only 35% of patients had raised VGKC antibody titres detected by the 125I--dendrotoxin immunoprecipitation assay, this is likely to be an underestimate. We have previously discussed the relative insensitivity of this assay compared with a molecular-immunohistochemical assay that detects serum binding to frozen sections of Xenopus oocytes injected beforehand with cRNA for an individual VGKC subunit (Hart et al., 1997).

Our EMG data suggest that, in many patients, PNH was more evident distally than proximally. This is in keeping with the previous evidence from detailed peripheral nerve excitability studies of 20 of the patients reported here that spontaneous activity is often generated focally or multifocally at sites distant from the recording electrode over the trunk of the nerve (Maddison et al., 1999; Kiernan et al., 2001). Thus, our present findings together with the evidence provided by these excitatory techniques and previous histological and conventional electrophysiological findings (Isaacs, 1967; Deymeer et al., 1998; Newsom-Davis and Mills, 1993; Vincent, 2000) suggest that, in most patients, the likely locus for the generation of spontaneous discharges is at the motor nerve terminal or intramuscular arborization. This was proposed originally by Isaacs (1961). At these sites, there are VGKCs producing fast K+ currents unprotected by either the blood/nerve barrier or myelin sheath, and thus potentially more vulnerable to antibody-mediated autoimmune attack.

Thus, acquired forms are classed as autoimmune, toxic or degenerative, and hereditary forms are defined by their underlying genetic disorder. This classification has the added advantage of being flexible. It can accommodate new information about the molecular pathogenesis of the syndromes without the need for a fundamental reclassification and should facilitate the testing of new therapies. "


Personally, if I have my choice of taking advice from kevintwister or from Ian K. Hart1 Paul Maddison2, John Newsom-Davis2, Angela Vincent2 and Kerry R. Mills3 1 Neuroimmunology Group, University Department of Neurological Science, Walton Centre, Liverpool, 2 University Department of Clinical Neurology, Institute of Molecular Medicine, Oxford, 3 Department of Neurophysiology, King’s College Hospital, London, UK
I know who I would chose. I like dealing in reality. The reality is that there is a lot of scientifuc evidence beyond this one study that there is an autoimmune component to this disorder fo a number of us. I find that reassuring myself. I don't like long lists of "anxiety" symptoms with no basis in either fact or research. That helps no one with BFS/BCFS/PNH in the long run, though it might help those suffering strictly from health anxiety, of which I'm not one. There are a lot of conditions that have physical symptoms and unproven, though scientifically examined causes, like my husband's arthritis.

To each his own, but success to me means dealing with the facts so that I can be truely better, both physically and mentally, in the long term, not just an emotional short term fix.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby j7m on November 15th, 2007, 10:47 am

"Idle minds are the devil's playground"
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Postby Jennhaz on November 15th, 2007, 11:20 am

Jesus bore my sickness and carried my pain. Therefore I give no place to sickness or pain. For God sent His Word and healed me. (Ps.107:20)

"Life is what happens to you while you are making other plans!!"
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