furballfury
Well-known member
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 furballfury, 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 alone...you 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 MarksmanS, 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...
JG
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 furballfury, 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 alone...you 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 MarksmanS, 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...
JG