Preparing For First Phase Diagnosis

I might have been relieved by the fact that I was finally diagnosed with a definitive name that managed to sum up every one of my medical issues into one large syndrome. Along with that diagnosis came the bad news that it wasnt curable and I was in the progressive state of the syndrome which puts me at the greatest risk for catastrophic issues that could be life threatening. All of this I am actually able to handle pretty well. What I can understand, is the doctor that labled the "beast", doesnt have the authority to confirm it in my chart so that I can focus on my future in regards to fighting it till the death so to speak. So knowing isnt always the answer to the problem, it just creates another long path to the solution.
The area I live in FL doesnt offer a particular university hospital, or a dr (s) that specialize in this syndrome so I would have to leave the area in order to get the full benefit of having it confirmed as a complete diagnosis. Well thats just wonderful seeing as there isnt just one particular state that has a medical facility that specializes in all the different facets of the syndrome so if your initial dr choses incorrectly based on symptom, you could be tested only to find out that, yes you have Dysautonomia but you dont have EDS or POTS or the countless other primary/secondary ailments associated with the ANS disorder. So EVERYTHING I read says to remain calm and rid your life of all stress, its a stress driven syndrome. Well of course, none of what I just typed is stressful, not even one bit.
So now we have to break it down. Because I have a history of presyncope & syncope events either narcoleptic in nature or cardiopulmanary, this gives us a local effort to be explored. I am currently under the watchful eye of an EP (Electrophysiology) specialist & I have a loop monitor already surgically implanted in my left peck muscle, this dr can actually diagnosis the potential for POTS (Postural Orthostatic Tachycardia Syndrome) just based on the syncope episodes. Once one element of Dysautonomia has been detailed, I can go at my own speed to find the answers to the rest. Do I really want to know more after that diagnosis should it come back positive for POTS? Well, part of me could care less, the fact that my heart could freakishly go into a wild state and basically beat itself to death or as the history of my monitor has already proven do the complete opposite and beat so slow that the bradycardia mixed with severe sleep apnea cause me to just drift off to that long endless sleep, I really dont think you can top that. However, so much of my life has been disrupted by this and its best I find out how many different types of attachments I actually have so that I can better inform anyone who reads this blog, (all three of you) and get the word out to possibly save someone the grief of living day to day, year to year without the answers they need until its too late.
I think under the circumstances, I should donate my body to science so they can go in and take a look. First offer my body at a base price, you know, suggested retail, Blue book. Then for each ailment theres an addendum price that brings my sticker up to the final price all proceeds of course donated to charities of my choice. Then let all these dr/scientists go crazy and once its all documented, I am sure I could fill a good week of Discovery Health time slot. Perhaps I could even have focus on a new reality show, "The Real Cadavers of NJ", seven of us meet in a morgue and have cool nicknames, "Decomposi", "The Stitchuation", "Maggotman", "Graveclimber" etc... GTL would mean Ground Then Landscape, showing how you come back to fertilize. I might be onto something here. Might have to call Bravo after this blog post is complete.
I think the hardest part of this whole situation is dealing with the unknown daily symptoms that might present as you have decided to head out for the day. Lately, the dizziness is awful, not only because its throws off my balance but it just takes so much away from your daily routine. Anyone who has a toddler understands the importance of having to bend over 300+ times an hour so imagine everytime you come up, its New Years Eve after a bottle of Cuevo 1800. Lying down doesnt mean forgiveness, you can get the spins there as well so you arent totally in the clear. The chest pain is something I can deal with, even when my left arm goes numb along with the jaw and shoulder. I freak the dr's out when I tell them something like that happened & it was days earlier before seeing them and they are going nuts because I didnt go to the ER. Well lets analyze that for a moment. I have from memory & I can confirm if I look into my medical folders in the closet have been seen for the chest pain issue either by dr or ER over the last 11 years shooting from the hip 25+ times with symptoms. I have had heart 2 catherizations, EKG's, Echocardiograms, numerous stress tests, enough blood drawn to fill a 55 gallon drum along with countless lab results, EP study with loop monitor implanted and to present day, I am still here with no lasting heart damage or issues pertaining to heart. Now the EP dr was able to manipulate the condition I had complained about, the heartrate that was so high I couldnt count it, the reason I know this was due to the fact that I woke up during the procedure & he said to me "can you feel that, I have your heart in AFIB(Atrial Fibrillation) right now". I wasnt able to answer audibly but what my mind was thinking was, "hey douchebag, of course its in AFIB, I am awake and you have shit shoved in my chest tickling my heart", before I had the presence to say it outloud, I was asleep again. Not for long though, I woke again & could hear everyone chatting away, moving stuff around. I could feel an area of my chest being prepped on the left side but due to a curtain I couldnt see what was up. I wasnt sure if it was live or a dream until I heard him say, the dr that is, "just going to make the incision here" and I felt pressure on my left upper chest. I then checked to see if it was dream or not, I said rather abruptly before I felt the scapel, "you know I am awake here RIGHT?????" The dr almost kind of chuckled as he stated they were fully aware I was & assured me the anesthesia tech was right behind me ready to take control, I never saw her but within a second or so, it was lights out again.
So I have run the gauntlet of procedures to find my problem & when you come across a dr that suggests that its in your mind, first instinct is to spit in their face. I have had three drs now in 11 years suggest it and all of them I want to line up and piss on them after showing them my current diagnosis. All in my mind? Technically yes, ANS involuntary functions so you are partly correct, but the way you meant it, go "F" yourself sideways. What person in this world, subjects themselves to those kind of tests just for the hell of it?? I NEVER go to dr unless there is an issue, I hate going, its unproductive. Secondly, I am EXTREMELY terrified on needles which every procedure I have involves needles or IV's. Again, another reason you want to spit on them, but I explain this to them and thats the only reason that keeps them from suggesting you need a padded room. They can believe someone would do this to themselves electively. Rather than get their hands dirty though and make some valid attempts to get to the source, I am passed around like a hot potato until I accidently become completely symptomatic in 2011 & everything seems to fail all at once and now I demand answers. This sparks the proper situation for the dr to become completely focused for 30 minutes as I sit bitching about all this crap happening with no answers. I got my answer now, kinda like seeing a huge dog with blood on its face and its growling at you but you still ask if it bites. One way or another you are going to get an answer.
So one slow progression at a time now to get further along towards a dr being able to put it down in writing exactly what it is that is causing me all this hardship over the years. I anticipate that because the initial diagnosis took 11 years to come, the final proof will be just as evasive. I just have that kind of luck.
In closing, I think its best to add that you never want to give up. You must remain focused on getting to the bottom of the issue. Of course when you are dealing with something that also effects your memory, watch the movie Ground Hog Day for the necessary humor you need to endure what you'll be going through daily. Thanks for reading.