In the past, my visits to the Neurologist were always just to brush up on where I was at with medications, cover some symptom updates, evaluate the overall quality and benefit of what the medications were doing for me and I'd be on my way in about 4 minutes and $214.00 lighter in the pocket. However, this coming Monday this will not be the case. My Neurologist will essentially be blindsided by a tremendous amount of events, procedures, medications administered, diagnosis rendered all of which hes essentially been out of the loop on. I have to assume that the other doctors that have taken lead in all of this have been including him in everything thats transpired since my last offical visit with him but who really knows. The last notes my family doctor sent to his office were ignored & my family doctor took it upon herself to order the necessary tests that should have been the Neurologists responsibility.
When I was first seen by him, he had ordered a battery of tests & other doctors to evaluate my situation, this was due to my toxic encepalopathy, most of which is a blur but I have the records that I have glanced at and I am actually shocked at all the stuff that was done to me with no real results found. Surprised, no but the fact that I really didnt recall all these visits, yes. As time went on and it seemed he was becoming more frustrated with the results of medications he was giving me as if they were miracle drugs and I should magically snap out of the funk I was in, he then started to have my wife involved in my visits which only complicated things for the worse. I no longer existed in the room, I was being treated like I was a 4 year old and my wife tells the doctor I was depressed which was music to his ears, a way to pass the buck to another doctor. I chose not to defend it, why you ask? Well the first thing that further proves the stupidity of others is denial of what they suggest. I knew I wasnt depressed, its was my wife who was being treated for depression and she wanted someone else to come aboard. I knew whatever physcologist I saw would easily see it wasnt depression. This is obviously where the Neurologist dropped the ball a bit. He looked for that quick escape rather than studying my medical history which had all the answers right there for him to see, ANS disorder is a Neuro disorder, all those wall charts in his exam rooms might as well have been pictures of ducks throwing hand grenades, they obviously werent there to value any logical thinking for the office.
So I went to the shrink and after a handful of visits, he said without hesitation, no depression whatsoever and didnt need to see me unless I wanted to see him. I asked why I would want to see him if I didnt have depression issues and he just said he was intrigued by the fact that I had so much happen to me and I wasnt depressed, he was so curious as to what truly made me tick. I thanked him of course and told him to buy the book and we both laughed.
I returned to the Neurologist after all those visits, not to rub it in or be a smart ass but to inform him that I had done exactly what he had requested & when he heard it wasnt depression, he was almost kind of angry with that. He brought up a Neuro/Shrink test I had taken which all I remember is being dropped off for many hours at an office and they kept asking me crap. He said that my results came back as manipulative. Ok, so what does that mean? I had this test done, dont recall taking it, found out it was a bullet multiple choice test so I can only imagine what I chose as answers if I cant even recall the fact I held a pencil to take the test. I had to question him at this point only because of the fact I didnt even remember the doctor that I saw for the test so how is it possible to have this test as gospel when the total visit is a blur? He decided to retest me which I was all for. Oddly enough, my positive response to being retested and willingness to get it set up immediately ended up being a dead end. The referral never happened because it became apparent he knew I was pulling anyones chain here, I was truly screwed up and all I wanted was help which he was running out of answers.
I saw him after being in the hospital with the staph infection & he was aware of the upcoming lithotripsy, cant recall if he knew about the abdominal issues but he will be briefed when I arrive on the 12th. I think what I am most concerend with now is the doctor ego issues. When the diagnosis is floating in front of everyone and someone finally grasps it but not the doctor that should have been the one to notice it, now I have to wonder if he'll work with the others to do his part to combat my issues and further test me for the other linking syndromes or will he go against the other doctors diagnosis and create a total shit storm for me which he did in my personal injury case? This is the concern I now have for a doctor that I once saw as my saving grace, I now view him as 50/50 and I have my concerns. I know that I cant function without the meds hes prescribing so his end of the care is working to help me function but not at 100%. However, now knowing what everyone is up against, I dont think any doctor on my "team" can expect 100%, we have to be happy with 80% its just that complicated an issue. When I go fully symptomatic, it over rides all medications so what chance do I have of being 100%? I dont really think anyone can figure out how that happens, I live it and it completely baffles the crap out of me.
I dont know how many other specialits will be involved before this is all over but I will say that its an education beyond belief. I never imagined I would have such complications in my life that would affect me to this extent & essentially leave me damaged to where its a struggle to leave the house some days. You read about stuff like this and in your mind you have sympathy but you also have that thought of "geez, get over it man, stop over reacting". Well for anyone I ever expressed those thoughts too in the past, I am beyond sorry until you walk in another persons shoes, you can't make a definitve statement about them.
In closing I have to say that given a choice somedays between life and death, there are days so bad that death looks promising, thats how real this is. The pain is so intense and so relentless that it causes you to feel as though tomorrow may be worse & who wants that? All it takes for me to deal with it another day is thinking about my children and how much they mean to me. The pain makes me irritable and angry sometimes which sadly comes out in front of the kids, not at them, its usually some ridiculous household item that decides to cause me havoc but nevertheless, if I could manage to keep that under wraps, I'd say thats the only thing that truly bothers me about this whole mess. You have to stay positive always. Thanks for reading.
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