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Epilogue - Part IV - The Final Words from Mayo and Moving On

PostPosted: December 10th, 2005, 1:10 am
by puggriffey
SO, the next day, we are back for the neuro follow-up. The rest of the agenda seems irrelevant, and of course I do not yet have the results back that I published in the previous "episode" of this tale. So I am tired, without sleep, and very nervous. I bring my wife with me for support. Bless her soul, she in not nervous in the slightest. How do people do this I wonder?

The neuro does not wish to have her come in - he wants to talk with me alone. Cindy agrees, and waits outside. Again, she is remarkable. I, however, am freaked out.

When I sit in his office, he gives me the EMG report. I am stunned. I ask him what this means, and why they had not done a more thorough bulbar evaluation. He of course confirms that this confirms no MND - no ***. Will I get it in the future? Perhaps. Just like he might. But not as any sort of direct link to what I have now. No chance. And he was not through.

He relayed to me that Mayo sees a vastly greater proportion of what they refer to as patients in the "sick role" than probably any other insititution in America. Why? Because Mayo is a fourth degree referral insitituion. When most cases get there, they have been through a number of series of evaluations and tests. In some cases, people end up at Mayo because there is something definitely wrong, and people seek the best care and second/third/fourth opinions. It is a portal of last hope. For many, many others, Mayo is the last line of defense to find that missing diagnosis, solve critically tough medical challenges, etc. In many, many cases, mostly in young, successful, intelligent patients, the balance between organic causes for illness, and the application of psychological impulses into the state of well-being or illness, has become altered. Over time, accompanied with intense, unyielding focus. With this comes scenario painting, worst case work ups, and intense anxiety in the patients' minds. And at some point, we fall into the "sick role" - our bodies actually start functioning as if we are sick. For the same reason med students spend countless nights in the bathroom or in the office of their lecturing doctor, our minds create a backdrop of illness and start creating a complicated tapestry of real physical symptoms and minor, vague somatic complaints, that becomes too hard for ordinary science and especially the patient to sort out. At this point, the neuro believes, we start to see patterns of complaints that may be the underpinnings of things like chronic fatigue, fibromyalgia, and other unexplainable physical syndromes (like BFS?) with no organic root cause that is definable.

He then proceeded to diagram in great detail how the neurological systems in our bodies work. This is not guesswork, and leaves no room for grey fuzzy. Do they know everything for 100% sure? No. But has medicine evolved under intense study for a long enough period of time under the care of highly trained and specialized scientists to know real patterns from meaningless "shades of grey" (my words, not his). Yes - very much so. And when you map that logic against how some of the greatest breakthroughs and remarkable work being performed in genetics, among other fields today, it is hard to refure this argument. Not puggriffey, not any of us, is so remarkable to be that one science-defying case, regardless of what we think we read on the internet. There is a well founded basis for everything they are doing to us to evaluate what we do and don't have. I, for one, feel very guilty and ashamed for ever doubting this, though it is so easy to do.

I have a diffuclt road ahead. I have a debilitating, andf real, health anxiety illness, that is now most likely manifesting itself in physical symptoms. Whether I am on the road to chronic fatigue, or some other pattern of physical symptoms, I am tangled now in a mess where my organic systems and functions are normal, but my physical being is not. Why is this important? Because as I sit here tonight, typing this out, with a fully normal, and complete physical workup performed by the world's greatest physicians and highly trained staff, I do not feel well, and my neck is still weak and in spasm. Why would I ever feel that an exclusion of *** would "cure" me of all that ills me?? In this mental game we play, we count on the relief that a negative test result brings as a "new start" - a fresh look at life. Yet we linger here. We do not remove ourselves from the cycle...why? Because, as this doctor stated to me, "it becomes more than a patient can do become trapped, and your mind will only get more sophisticated in how it paints new symptoms, and scenarios..."

I cannot deny this any longer. My symptoms are REAL - yes. And they know this. But my diagnostic history is so complete, and so NORMAL, that I am faced with choices. Keep pressing, certain that I am one of those internet exceptions...the people who had something missed, who 'knew it all along". Or, I can attack how I perceive my being - ill or healthy? - and commit to living life, and not fearing its untiely end through disease. I'll tell you - 6 months ago, I was SURE I had conquered this BFS. I felt great, wasn't twitching, and had come through it. But one pattern of new symptoms undermined it all. So in the end, I hadn't conquered anything. Not by a long shot.

My official diagnosis from Mayo:

"Patient has acute hypercholesterolemia...patient suffers from chronic anxiety and probable depression - suggest consult by psychiatrist for long term treatment approach...patient neurological complaints of unknown, but benign, etiology. Likely irritation of the potassium-gated nerve channels, producing ongoing muscular symptoms of varying degrees/amplitudes...patient is mildly obese, and has been prompted to adopt healthier lifestyle approaches, including stress reduction, exercise, dietary changes, and regular medical screening. We will rerun lipds in 6-12 months to evaluate Gilbert's syndrome progression when mapped against these lifestyle changes..."

Patient appears healthy, albeit anxious about physical status. No further medical treatments suggested.

End of 9 days. Beginning of new life. (PS: a video swallow study was performed after I complained of the swallowing/regurge problems). I got to review it with the doctor. When I swallowed I could "feel" liquid moving up the back of my nose. On video, and with their equipment, you could very easily tell this ISN"T the case. All functions normal. What better demonstration of what we think we feel is not necessarily anything close to what is happening in reality...

I will miss the people on here, but my leaving changes nothing. The good work you all do - I have done - will continue as a new cycle of posters, and a few brave vets, continue to presson with this critical work. I encourage each of you who have been twitching for years, but are still stopping in looking for answers, reassurance, or just other friendly voices - STOP. Your time here is done. Our time to continue fearing *** or something sinister, and always wondering if the latest change or "down period" is significant, is the "sick role". I felt for Mark S, so strong, spirited and seemingly "stable", landing in London and struggling anew. I did it too in September. We linger here because deep down, we are not convinced. I admit it. And yes, I did my best to help, and bring to life as much good, real information from my neuros as I could for the benefit of those in such a dark place when you first get sucked into this. But, I now know, this was as much for me, as anyone else. I am still scared, anxious, and deep down - unconvinced. Now, I have only that to work on - yet it will be the toughest fight yet.

My psychaitrist appointment is scheduled for Tuesday. It is the first of many I am sure. I will also be seeing a physical therapist to help strengthen my muscles, especially my neck. The doctors all said I can, and will recondition myself, and should press on. Even if this is a post-viral condition, it has not left me with a myopathy that has degraded muscular function - this much we know. So, if I feel like c*r*a*p, like I do tonight, at least I know my muscles, nerves, muscle nerve channels, etc. WORK and are HEALTHY. What caused this weakness, and how I may never know - doesn't concern me. I have work to do now.

I wrote these as a parting gift - most may find it useless, others may find it hopeful. I know when I found out about all this and slipped into "darkness" as a newbie 20 months ago, I desperately combed through here looking for stories that sounded/felt like mine, and confirmation that those people were OK. I always loved hearing someone come back from Cleveland Clinic or an *** Center with news. Well, I can tell you dear reader, I have been through probably most everything you have experienced, and now some you hopefully haven't (weakness, bulbar symptoms, etc.) and won't. Your chances are better if you begin accepting your bening diagnosis, and FORGETTING ALL OF THIS RIGHT AWAY. Do not allow the cycle to keep going. Seek HELP. It is nothing to be embarrassed or cynical about. And for heaven's sake, keep an open mind to spirituality, even when (especially when) things are good. I wondered often when in those waiting rooms if any of the more desperate cases had spent their lives rejecting God, or denying the existence of a world beyond. And what were they thinking now? Is it ever too late to commit, and do you want to find out? I already am making progress on that front - committing to my faith, to the concept of life everlasting, and the awesome power and wonder of what awaits those who do believe and fulfill God's promises. We are so LOVED. I prayed long ago to God, when things were dark, that He would strengthen me to seek and find the places, people and things that would help me heal and find help I need. And Mayo was there for me. For most, it doesn't take that, but God will always provide for us that which we need to meet our challenges and uphold our commitments on a daily basis. I strongly believe our responsibility is simp[ly to accept and use those tools/gifts, and live the life we were meant to live. The way we were asked to live it. And if I am right, judgment day will come - tomorrow, then next day - we are living it now...creatures in God's image, with roles to play in fulfilling God's promise. I've got work to do - and I leave you all in very good hands.

I will check PM's from time to time to keep up with friends, but will not go into the forum anymore, even to read responses (if any - are you still awake???) to these notes. I just can't...I'm not strong enough to fix my challenges and still relive old memories. And so this epilogue to AboutBFS ends for me. I will pray for all of you every day, and thank you with all of my heart for the support, prayers, strength, guidance, and real love you all showed for me when I was in need. I hope this experience helps those who are experiencing the real fear for the first time. We have been there, you will survive, and a wonderful life awaits you when you recover - in this world, and the next...


PostPosted: December 10th, 2005, 8:12 am
by lynxminx
Your neurologist is a little behind the times if he thinks Chronic Fatigue and Fibromyalgia are psychocomatic illnesses 'without organic basis'.

They haven't figured out what the organic basis <i>is</i> yet, but there's concrete evidence that they are physiological, not psychological, conditions.

So if I'd been through the same experience as you, I wouldn't have walked away from that final interview feeling reassured at all. Which isn't to say that you're not are. Just that you shouldn't be quick to accept a diagnosis of 'hysteria'.

PostPosted: December 10th, 2005, 9:13 am
by Alex_als
First of all this is great news for you. You now definetly know that you havn't got als.

I will write down at what stage i am with confronting this mess. This is in relation to the first answer.

After having gone through the 1 year of doctor visits, i finally have come to the following conclusion. I havn't got als or ms. No cancer either. This is great news and i'm happy for this. However i have had many many symptoms. I cant deny that i havn't had them and still do (they rotate however and this is more difficult to handle than persistent ones. Soon after having overcome one fear you are pushed into a new direction and you must then overcome the other possible disease).

So where does this leave me. I must adopt to the new cicumstances. I am very young and hope that nothing will develope. It is difficult for me to do this on my own. My partner is very helpful but i know i must see also an expert. Furthermore i am going to try some yoga and chi. This cause i can feel the tension in my body and hope that i will let loose all this energy. I will further try thinking positive. But and this is the last part the symptoms have been there for me since a year. Nobody knows if and when they might go, so this will always remind me at something. How much this won't give me peace is a battle that i have to win.

PostPosted: December 10th, 2005, 10:15 am
by wjjw
JG wrote:I wondered often when in those waiting rooms if any of the more desperate cases had spent their lives rejecting God, or denying the existence of a world beyond. And what were they thinking now? Is it ever too late to commit, and do you want to find out?

It’s never too late for anything, and we’ll all find that out, one way or the other. Commit? Mankind has committed eons ago to playing a role in the ongoing evolution of consciousness, and bringing “heaven to earth.” Anyone who thinks that rejection of God or disbelief in a single life will cause them an eternity in hell is just as mistaken as those who think that their belief in God will have earned them a right to eternal bliss in heaven.

JG - I guess you won’t be reading this, but I’m very happy for you and your family that you are physically well, and wish you the best in your ongoing progress. Your beliefs about God and the afterlife are not that important. But in the midst of your agony, grief, and personal struggle, you took the time to temporarily overcome it, and to take care of your children and read to them. That does matter. Acts like that are more important than adhering to any “beliefs.”


PostPosted: December 10th, 2005, 10:17 am
by Alien Host

Man, you had me rolling there in the first and second part, I was tearing up a bit! Your story will ring bells in many peoples heads, I hope they can appreciate what you have left behind. In the end, you have left a smile on my face. I applaud you and pray for a speedy recovery.

BFS 10/15/04 - ??/??/06 :wink:

PostPosted: December 10th, 2005, 10:42 am
by Taylor
I can totally understand how anxiety causes physical symptoms. I have been through many of the same things you describe. I never would have believed I was capable of actually having real physical symptoms after reading things on this website. Sometimes you read about a symptom and it lodges in your thought process somehow and before long you really believe you have the symptom.

I have been to 3 neuros and over the summer my GP put me on lexapro once a day and xanax. I had a little shaking for a day or two on the lexapro but no other adverse affects. I feel fine on it. He told me to take 1/2 xanax first thing in the morning and 1/2 xanax before going to bed. I did this for about 3 months and it really got my anxiety under control. I am off the xanax now and will continue the lexapro for up to a year. My GP said the lexapro also has some anti-anxiety properties.

The most important thing that helped me though was to stop thinking about my symptoms 24 hours a day and staying off of this website and any other medical websites. I came back on to post information about my third neuro visit at the neuromusclar disease clinic at Washington University Medical School/Barnes-Jewish Hospital in St. Louis, MO. It took over 4 months for my appointment and I was also relieved by my diagnosis.

The neuro I saw who is the associate director of the clinic and director of the electrodiagnostic lab also said something similar that you stated. He said 70% of all benign fasiculation cases begin after some type of viral infection.

Good luck to everyone and I wish everyone the best. I need to continue to stay off of the website.


PostPosted: December 10th, 2005, 11:01 am
by basso
.and in the end the 4 part diatribe comes down to this:

1. I'm freaked out about ALS.

2. Still freaking, more tests needed, could the docs be wrong.

3. Freaking, more testing, more questioning of efficacy of docs and test. What is life all about anyway? I'm freaked.

4. Freaked but have come to some resolution, for the time being. Guess the docs must be right, sx real, dx of ALS not. God has been found, for not the first time. I guess have I have big time anxiety.

Although puggriffey's motives have no malice attached to them,
he has written an essay, not about BFS and anxiety, but about himself. As people who have all suffered the same kind of panic at one point in our lives, does not this kind of moaning diminish our own experience? I believe it does. Should we all write 4 part novelettes about the trials and tribulations of our BFS? Should we all begin writing serials, where we indulge in the use of cliff-hangers, and so peak the emotions of our comrades as to send them into turmoil? I think not!

I have shared pm's with pug and I found him to be a generous and honest man, but at the moment I am perturbed by his posting. Why? Well, it was all disseminated in one evening over a short period of time, which shows that there was planning on his part. If he had intended to premeditate and then launch into the BFS story of his life, then he should have confined it to the Off-Topic Lounge. Did he not think that his first post would engender high-emotions?, of course he did. I resent this kind of emotional manipulation. It is a disservice to the many here who care for him and poured out their hearts, on numerous occasions in his call for help.

Yes, Pug has done much good on this forum, and I know that he is suffering with, what can only be described as a, debilitating anxiety disorder. His mini-series, I'm afraid, highlights that his mind is in over-drive and from this busy, galloping mind he has rendered something more of a self-indulgent nature than of a self-healing one.

Edited a couple of days later to reflect my affection for JG, who is no doubt suffering a great deal.


PostPosted: December 10th, 2005, 11:25 am
by dave y
I found his posts to amount to valuable introspection. If you can relate to him in your experiences, I think anxiety disorder is something you (and I) should look into. Not sure why Basso's reaction is so dour, I think he has practiced his own flavor of emotional manipulation plenty on this board. Let someone else have a turn, eh? And the horror, someone premeditating what they will write, especially when delivered in chapters. How insidious.

No, this is the gist of his report: I freaked out over ALS, ruined my life for a while, but in the end have to accept it's BFS and anxiety. If that story doesn't belong here, nothing does.

PostPosted: December 10th, 2005, 2:05 pm
by wjjw
JG’s post is valuable in that it clearly illustrates just how serious health anxiety can be in an extreme case and how much of one’s life can be wasted by it. It is the number one problem faced by many of the people on this site. Maybe some who are suffering severe anxiety will read his posts (in total) and realize that they need to snap out of it. I think that was probably JG’s intent. Unfortunately, I highly doubt that will be the case. In essence, did the posts add any new knowledge about BFS, ***, anxiety, neurological exams, the Mayo study, or other related topics?

I agree with Basso about the preplanned drama and emotional manipulation in the posts. Last night, I read only the first post before going to sleep. I was tired. I have a virus that ended my 1 month of being nearly twitch free with a new flare up of twitching. I did not know what “real illness” JG had to aggressively deal with, but I was certain it wasn’t ALS. But I’m not sure if anyone new, just reading this post for the first time, would come to that conclusion.

I also wanted to know why “this vet” was telling me that my symptoms “WILL get a LOT worse.” Maybe that’s not what he meant, but how many new people, in a state of panic, might read this and freak out. They could easily come to the conclusion that not only would their symptoms get worse, but that they also had a “real illness.” My initial reaction to that (which I overcame in about 5 seconds) was to send him a PM telling him to f$%ck off, and that he had nothing whatsoever to back up that statement. How does he know who WILL get worse? Why did he wait 1.5 hours with the follow up? That, I believe, is the emotional manipulation Basso was referring to.

Luckily, I knew better, and just went to bed. But what if someone new, who is in a total state of panic just reads part I? What if they just freak and stop reading? What if they’re on the verge of being suicidal? Sound far fetched? Maybe, maybe not.


PostPosted: December 10th, 2005, 2:08 pm
by basso
Perhaps Dave Y, introspection is part of the problem; taking from the outward and then looking inward. I prefer to think in terms of extrospection*; taking what is inward and then looking outward.*(there does not appear an antonym for introspection and so I have taken the liberty of making one up) I may have uncovered the fatal flaw of man. :lol:

He thus typified the constant introspection wherewith he tortured, but could not purify himself.

The Scarlet Letter by Hawthorne, Nathaniel

Your comments are well taken, even though I do not, obviously, agree with them. I do however, have one bone to pick with you. As a Canadian I will not abide the willy nilly throwing about of our sacred "eh?" That really was going to far.


PostPosted: December 10th, 2005, 4:31 pm
by puggriffey
I was very tired when I sat down to post this "final chapter" last night. Upon waking, I decided I wanted to come on here one last time and make sure I said what I really wanted to say, and didn't mess something up due to my fatigue. I'm glad I "broke my rule' for one last visit, as your responses to the posts were insightful.

I have edited the original post to clarify what I meant by your symptoms WILL get worse. It was intended to apply to those of us, like me, who continue to probe, explore, indulge in "what if" thinking, despiite numerous assurances that all is well. I think your harsh reaction to any insinuation that we all (or even many) are going to get worse is valid - that was an unintended, and in my humble opinion, inaccurate statement for me to make. The new version should clarify.

Months ago I would have wholeheartedly agreed with Basso's post. I even remember times where I mocked the thought of being out of touch with my fear, and in denial about health anxiety. One only needs look back on my posts on here to get first hand evidence that I was like many/most of you - "strong", "reasoned", "logical", "optimistic" - what have you. I have even supported and endorsed Basso's approach to viewing life and findgin the man inside of yourself. Guess what. I now believe strongly that a major part of that effort is exactly what was intended by these posts - not manipulation or drama for drama's sake (can you IMAGINE how long a single post would have been???). But a challenge and call to each of us on here to face and accept what is really underlying ALL of us who have come here - FEAR. Fear of dying, or of severe illness, or what have you. And whatever approach we choose to take, be it my past logical breakdown of this syndrome, or Basso's colorful tapestries of life's inner meanings or lynxminx's prepaid confirmations that the world is cold, and she is doomed a miserable existence, we all are here with unresolved fear within. Now maybe I sound hysterical and less rational now - I suggest most any of us on here would if faced with a new series of symptoms like mine and others' (SuziQ et al) that can creep in...the point is that there is such clarity now that this builds within if you let it go unchecked. If you can honestly say you never experience doubt or insecurity about this again, then I applaud you. This is only a call for each of us to sincerely look in the mirror and do what's appropriate before it gets away from you as it obviously did me. Looking back, I could have used more of that advice from here when I started my journey down this road. And no, I don't think I'm any less of a man for admitting openly and honestly to all that I am not strong enough to face this on a daily basis by returning here. Wanting to leave this as a first hand, introspective look at where this can go if you let it is simply a final contribution of what should and can be very helpful to the right people on here in the future. The ins and outs of what *** is and isn't are well documented. The depths and complexity of health anxiety are still in a state of "debate", and this hopefully brings that end of BFS to the fore.

Finally, faith and physical. Many have relayed that the first many doctors sluffed off the problem as psychological, only to find later that something organic was underlying and took time to develop (NO - not *** or MS). That could be. It is no easy decision to stop trying to find THE physical answer for what ails you. I feel awful today. I may in 6 months. But this one person's choice is to find the strength within and through therapy to gain control over and comfort within a body filled with uncertainty - today, tomorrow, til whenever. For me, and many others, faith in God has to be front and center in that effort. Life without hope is despair. I cannot imagine greater hopelessness than conviction that it all ends when we get put in the ground. In some respects, this health anxiety is simply a dramatic manifestation of a fear of anihilation, which is natural in creatures who believe the end is the end. I know down deep I do, and have always, believed that there is a greater world, and that we are loved by a Gods who is powerful, loving, compassionate. But I don't think I've ever really applied that in any meaningful way to my own existence. Shame on me. Should you care? I suppose not. But I have great hope for all on here, and I believe again that it is never counterproductive to open this line of reasoning to anyone who is in the "dark" early stages of this fight. Looking back, if I had committed more of my time, passion and energy to the application of faith to my existence, rather than a frruitless exploration of websites, literature, postings here there and everywhere, etc. I may not have wound up where I was recently. I am healing now, but I have carved out a long uphill path for myself to climb to get there. For me it starts with strengthening my faith and my spirit.

I do so feel such unspeakable gratitude and joy for the existence of people like all of you, and what we do here. For any of this to come off as an inditement of the value of this site, and your collective efforts, would be a tragic misinterpretation. In all honesty, NONE of these posts was a premeditated effort - I simply sat down to type and put closure on this for me. The "4 parts" is merely another goofy representation of how my left brain works (or doesn't) in how to make something so long manageable for those who want to follow along. I am no more important or learned than the newest of posters on here, or Aaron himself. I simply feel it's time to contribute one last first hand account, and move on. I think many of you will reach the same conclusion in your own way, at the appropriate time.

I wish you all peace and a full life of health and happiness. I am so looking forward to the same, and I thank all of you who have expressed best wishes to me.


PostPosted: December 10th, 2005, 4:55 pm
by dave y
I had no idea you were Canadian! My apologies. Actually the intonation in my head was a bit different.

Well, I'm just mystified by the condemnation of someone putting it all out there so to speak. Hell yes it's intended to manipulate, every single post anyone puts here is intended to manipulate others into believing something or another. I don't see how his is different, even in content, other than to be particularly successful at engaging the reader.

PostPosted: December 11th, 2005, 11:04 pm
by basso
Are you apologizing because I'm Canadian. :lol: That is our territory; we Canucks are afflicted with a most terrible boy-scout type mentality. My reference to the "eh" was meant to be light-hearted so no apologies necessary. You can even be an honorary Canadian because you were not in favour of the Iraq War, and neither were we, well at least not our government. :lol: (Please people, I am not stating an opinion one way or another. This is one topic, as a non-American/non-Brit I am staying well away from)

At first blush when you said that:
every single post anyone puts here is intended to manipulate others into believing something or another

I thought, "how cynical." However, after considering the point I was bemused by the fact that I could see your point. This made me cogitate on the matter of manipulation vs altruism, and not to my surprise it is complicated as HE double hockey sticks (just can't get away from Canadian similes) :D

I even wrote a long and boring post on the matter which I have decided to place in the Off Lounge area of the forum under the heading of, what else, Manipulation. I don't wish to place it on this thread because poor old JG has been through quite enough, and should he chance to take one more look I would not wish him any further anguish. (how manipulative of me) I stand by my post above, but JG is an honorable man and is most definitely in my heart-felt thoughts. It is my hope that he will return to the forum, having bridled his racing mind and engage me with a serious tongue lashing. (No SuziQ this is not another sexual reference; in any event my preference is for women)

Thank you Dave Y for prodding my intellect. I am no Kant or Sophocles but I do enjoy my musings.


PostPosted: December 11th, 2005, 11:28 pm
by Johnny

If you ever do come back and read this - I just want you to know I thoroughly enjoyed your story and I'm glad you posted it. Good for you that you've been to the experts and walked away with a clean diagnosis and a new appreciation for your life.


PostPosted: December 12th, 2005, 3:28 am
by dave y
As an expat living in Europe, I accept your offer of symbolic honorary Canadianship... I'll fit in with the crowd better! I return to the US to visit occasionally and the ever-increasing hyper-patriotism is frightening. When viewed from the outside, it's like a crowd mental imbalance. Hubris Maglinatitis or something. A few years ago my politics were centrist... Without having changed, i'm far left now! Weird.

Anyway, JG's is just a post, really, a fleshed-out version of what so many of us have been through and so many more will follow with. I found value in it because I was relieved at his final dx, and not just for him, for me too.