I've been holding off writing until my neurologist appointment yesterday. As you have probably surmised, I'm not the best at keeping a short story short. Apologizing in advance...
Let me start by saying I have been to countless neurologists over the past seven years. Several at the Mayo Clinic/Jacksonville, University of Florida in Gainesville, Cleveland Clinic/Weston, the University of Miami and several local. I've often wanted to go back to my old and very comfortable stomping grounds at the University of Pennsylvania, but not in the best shape for the trip.
You all know my problems started with a bang seven years ago. I went from a very vibrant, alive and super active and exciting life to that of an extremely ill person, completely out of commission and without purpose. When this all hit, I had no idea that this is how I would be spending the rest of my life. I haven't always been as sick as I am now. It has been a slow and steady decline. In addition, I have acquired POTS, which is extremely debilitating. From seeing my immunologist, I am aware that my immune system is all but destroyed, effecting every cell in my body and brain. I won't bore you with all those details, but it contributes to my total picture.
All the while, I have yet to get a proper diagnosis for my debilitating neurological problems that started this all off when I was forty eight. I was dealing with those symptoms for the first several years I was sick...and I was very sick.
I have been tested for more things that I could ever list. Also, I know it is impossible to test for every single disorder, syndrome or disease that coincides with my neurological symptoms. I get that. In the meantime, it is maddening not having the base diagnosis, which the other things seem to be stemming off of. (All except the high csf pressure around my brain and, of course, the aneurysm)
Over the years, I have read a few books written by women who are chronically ill and have seen countless episodes of Mystery Diagnosis. I so completely relate to the patients on that show. Because of these things, I am well aware that it can take years to get answers. Frustrating??? You have no idea. I want answers and I want treatment...
As you can see, I have taken you over the river and through the woods to get to my neurologist appointment from yesterday.
I have been seeing this particular neurologist for approximately 2 1/2 years. Since the first appointment, I haven't quite been able to decide if he is good enough, bright enough, interested enough, caring enough.
Yesterday, I spent the entire appointment crying my eyes out, giving him a piece of my mind, while pointing at him with every issue I had with him. I was outraged!!!!
Since I began seeing him, he has been fixated on my cysts up and down my spine and the CSF pressure issue. Great...don't miss a step with this..yes, very important stuff. BUT, what about all the other things going on. His response has always been, let's deal with this first, then we'll get in to that. It's been over two years and he still doesn't want to "go there"!?!?
I have been so, so sick in the past several months, that I was really looking forward to this appointment. We have to get moving on answers....period.
When I brought up how sick I've been, the water works started.....when you are woman, in a doctors office, and the tears come, you immediately lose credibility..FYI for those that haven't been in this situation.... For some lucky reason, over all these years, I think I only broke down once with a really great woman doctor at the Mayo Clinic.
I told him that we need to find answers to the original neurological symptoms from way back. He looked at me like I was telling him a joke. With a smirk, he said..."Okay, what's your symptoms?" So, I started with the laundry list. His response was "You've told me this thousands of times"!!!!! Then, just waved me off! I told him that I cannot believe that he doesn't take this serious, or consider working on that end of my problems. He said, all I can say, is that you have a major autoimmune issue that isn't identified. Hey pal, let's let's identify it!!!
I reminded him that he sent me to see a doctor that only addresses chronic fatigue syndrome. After seeing her, I told him that she said that I have chronic fatigue, in fact she had it in her file before speaking with me. He said, at the time, "You don't have chronic fatigue", very sarcastically, like he couldn't believe they would suggest such a thing. He sent me there...why??? Of course, he couldn't answer. Then he looked at me and...I can't believe I am writing this in the blog....but he looked at me and said, very calmly... "you are mentally ill"!!!!!!! ...all because I was crying, due to my frustration after seven very long and painful years, and my astonishment that he was in no rush to help. It is not uncommon for doctors to recommend patients like me, to see a psychologist when the doctors cannot find a reason for their patients issues....suggesting it is all in their heads. I think this happens on almost every episode of Mystery Diagnosis. No doctor has ever suggested that to me, since I have such compelling evidence. I could not believe he would say such a thing, merely because I was so upset about my condition and lack of progress. Mind you, I couldn't help but cry when we first started talking, because it has been so rough lately. My side of the conversation didn't get heated, until I was responding to some of his shocking statements and total lack of interest.
He said, in a patronizing way..."Why would you want a diagnosis?" WHAT???? I said "you wouldn't???" He said he would not want a diagnosis, and not want to hear that he is chronically ill and will only get worse....no, he wouldn't want to hear it. He point blank said he would rather not know. I told him, very heatedly, while sobbing, that if he had lost the last seven years of his life, spent most of it staring at the ceiling, unable to function or practice medicine, that he would be sitting where I was, crying just as I was and begging for help in finding an answer. I told him several times that I wished he could live with me for a week, to see what my life has been reduced to. He back peddled on the mental illness thing, saying, it is common in patients with chronic illness to get upset, then the anxiety over the illness makes their symptoms worse. Sorry buddy....the train had left the station. In the end, he walked me to the reception desk and ...get this...he said "if you knew what was happening in my life, you would never have talked to me like that".....WHAAAAAAT???? If he is having personal problems, maybe he should be taking a leave of absence.
Aside from that, my Barrett's biopsy came back normal...expected, but always good to hear. The Cushings test came back normal, which, to me, is not good news. I need the core cause of all my other diagnosed issues. They are coming from somewhere, but no one can figure it out. I am sticking with Dr. Mental Illness only because of the high csf pressure, which he is very interested in. (although, I may end up back at the Cleveland Clinic, just to have a "go to" neurologist...I'm only with Dr. Sigmond Freud to continue with the csf issue) He looked in my eyes with the light and could tell by the way my blood vessels were pulsating that the pressure is still too high, although it was enough to effect my vision....which it has, very much. He said he could tell that it was not at the danger level though. In the meantime, he put me on a medication that may help alleviate some of the pressure, and I will see him in three months to check it out. Also, he ordered an MRV , which is an MRI which focuses on the blood vessels in my brain. If any are blocked, that could explain the high pressure.
Yesterday was horrid to put it mildly. I was crazy sick last night and today was not good. It is how my body reacts to appointments in general, but yesterday was over the top. I really wanted to post last night while it was fresh in my mind, but it was not an option. Now, I can't remember half of my conversation with him. Just as well, this post is painfully long as it is.
This post is nothing more than purging my frustration from yesterday....sorry. Hopefully, I'll get to writing some more fun posts soon....I cannot wait!!
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