I often used to reflect on this anecdote I read about and then subsequently heard repeated from a neuro in DC. It may have been my first concrete step toward moving in the positive direction I'm headed in now.
There was a man being evaluated for a number of trying symptoms - I believe in the UK. He was eventually diagnosed HIV positive, and doctors prescribed a treatment plan for him. While in the hospital, the man, understandably, began reading up on, and learning as much as possible about HIV - it's etiology, progression, symptoms, stages, etc. He wanted to know what lied ahead, and the doctors, internet, and medical library helped him form a pretty good knowledge base about the disease.
Over the course of the next several months, the man began to fall more ill with symptoms, and problems. His body progressed rapidly down a bad course, and the doctors feared the worst.
Problem is - at some point, the doctors realized a mistake had been made, and there was no HIV. He was falsely diagnosed.
The rest is my reaction to this...
The man's whole being - body, mind, spirit - in one fell swoop fell into the "sick role". After all, who could blame him - he WAS diagnosed HIV positive (and if memory serves this was several years back before the progress we have with today's drugs was made) and had received a death sentence. It is easy for the mind to "accept" this and assimilate it, and from there, a natural chain of events should be reasonably expected to take place. Do we CONSCIOUSLY drive those thought processes and resulting effects on our bodies and spirit? OF COURSE NOT. Is it anyones' FAULT that these things occur? HARDLY. Yet I believe (and yes, this is my own personal experience driving this belief) we get trapped in the stigma and "unreality" that there could be something other than your classic cancer, HIV, **S, variety ILLNESS that CAN produce real physical effects (and sometimes horrible, disabling symptoms at that - just look at this poor man, whose health crumbled to almost death). The mere thought of it strikes us as absurd - we'd no doubt direct real anger at our bodies and minds for being so "out of control" as to "bring this on ourselves", and we'd fear the stigma of being so "weak" and "helpless" as to have a mental problem that other "normal" folks don't have.
In reality, I think many of us feel those things right now, and perhaps in many cases, it is that suppression of two CORE human emotions - anger/rage and fear - that got us to BFS in the first place. Once the body finally told us they could not remain trapped any longer, it was the mind's job to start finding rational, logical explanations for this phenomenon that DO NOT involve things that are "in our heads" and make us look and feel "weak" or "abnormal". Of course we do that. Who wouldn't - in the whole realm of survival of the fittest, you certainly don't go evolving into timid, fearful creatures, lest you be consumed and exterminated. Humans aren't built that way, and so our defenses go up, and we engage in defensive actions. And so it goes...
Jodi - that is a long way of saying what I think you, and I, and Basso, and all on here save a select few already know. The root cause of your REAL physical ailments and challenges right now is NOT an organic, cancer-type disease. The select few will never accept that, and will pursue an endless quest of searching, and I dare say a minute few will find an "answer". Many, many more will continue sifting through concepts we barely grasp - automimmune disorders, rare diseases, chronic this and acute that - until they either exhaust themselves into a self-fulfilling completion of the mission, or sink into a low depression and cycle of futility. For the rest, though we all have many more "dense" moments than moments of clarity
, we evenutally WILL get where we need to be - a renewed sense of wellness, wholeness, and life.
I ask myself often - when my dear old grandmother was 75, do I remember her as ailment-free, feeling "good" and healthy, as I DEFINE THOSE TERMS TODAY?? No, I distinctly remember episodes of painful arthritis, a hip problem, some disc degenration, and on occasion terrible bouts with sinus infections and/or flu. Guess what - she lived to 91, and died in her sleep of natural causes. "Healthy" as a horse, independent, vibrant - 91. My God, just let me whiff 91!!! So where did we fall into this trap of associating various body "ailments", pains, stiffness, weakness, numbness, fatigue, etc. with OMINOUS, POTENTIALLY FATAL DISEASE?? I wish I could answer THAT question, but I do KNOW one thing - somewhere along the line, I DID. No question. Jodi, I suspect you know you did too - it is OK, you are not weak or inaccurate or crazy. You just somewhere, like many of the rest of us, stopped associating these natural events that happen to every person with LIVING, and began associating them with DYING. Heck, sometimes I even look back at the things going on with me that I used to label as "abnormal" and not things "most people go through" and I now even question how I pretended to know that. I mean - look at the thousands upon thousands upon thousands of posters in the myriad of websites on the internet pursing the same quest for answers we are, and consider how many more people everywhere, poor to old, never used the internet or don't care to, too busy or distracted or forced to spend time working three jobs, etc. that never post. Then ask yourself, are we REALLY alone in this? Or are human bodies generally designed to go through ups and downs, and could those ups and downs be drastically accentuated when our entire focus, concern and being, dwells on them. I would argue THAT, AND NOT THE INITIAL SYMPTOMS THEMSELVES, MAY VERY WELL BE WHAT SEPARATES US FROM THE "NORMAL POPULATION".
Fix that, and you will be well on your way. At a minimum, you will NEVER have a clearer basis to KNOW if anything truly wrong is going on within you. No - not "symptoms", and not "...feeling myself, don't know what but I know there is something type wrong..." - but clinical, disease wrong. Thank God my grandmother didn't start associating her arm pain, leg pain, infections, etc. with the near-term onset of death. She may never have seen 81, much less 91. Am I, at 35, with a wife, two kids, and a real foundation for happiness, going to start frittering away life in a search for the cause of my death? Finally, 30 months into this thing - the answer is no. And not surprisingly, my health has rebounded SUBSTANTIALLY.
This is not ponification, omnipotence, internet diagnosis, or pie in the sky thinking, it is personal perspective, wrapped in good old fashioned common knowledge. If it does not apply to you, or any other reader, ignore it. We all must draw our own conclusions. But I think a real, honest, objective step back from all of this, and examination of this possibility, will lead most, if not all of us to the same place. We must get back to a core basis of "wellness" - within us - before our physical bodies will follow suit. Simple as that.
Blessings to all for a continued "recovery"
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JG
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It was actually me who made the diagnosis, before I ever went to the neuro. All of my symptoms fit, except for the fact that it should have shown up on the MRI that I had over a year ago, which had been pronounced normal. So I took a look at the MRI and found something that I thought looked suspicious. Then I went to the neuro with my diagnosis and MRI in hand. At first I think he was just amused at my proclivity to self-diagnose. (When I showed him the first MRI view, he confidently said, "That's a blood vessel.") But by the end I had him convinced. ("That doesn't look like a blood vessel.") As I walked out of his office, he said, "Impressive!" 
Who did you have to sleep with to get your mri results back so quickly?