This week has thus far been spent waiting in doctor’s offices. First was the neurologist, that wonderful department of rudeness, long waits and sterility. The second was the cardiologist, where, even when you may have to wait 40 minutes or more just to get back to a room and wait again, you still feel like you are at least appreciated and respected.
It is funny, perhaps ironic would be a better word, that two offices in the same building, run by the same hospital, would have as different an interaction with their patients as these two departments have. Unfortunately I had to go to these appointments on two different days, same location, even close to the same time, just on different days. That of course required two separate trips across town, two separate joys of trying to find parking, etc. One would think that in this modern age of computer scheduling and computer control of nearly every aspect of life an organization as big as a public teaching hospital could coordinate their appointments. Oh well!
Neurology. Webster’s Online dictionary defines it as, “the scientific study of the nervous system especially in respect to its structure, functions, and abnormalities.” So one would think that a neurologist, defined by Webster as, “a physician skilled in the diagnosis and treatment of disease of the nervous system” (emphasis added) would be able to come up with an answer other than, “I don’t know” and “You can get a second opinion.” Those were the answers I got this week to my follow-up examination. Not really all that reassuring. I know I have tremors. I know that I have pain, weakness and numbness in my limbs. I know that I have vision, speech and other problems that come and go as they see fit. Yet the only answer that I can get from the doctor “skilled in the diagnosis and treatment” is “I don’t know.”
So after two MRIs, a C-Scan, EMG, two separate sleep tests I have no more information than when I started. I do have mounting medical bills and a dozen or so prescriptions that are supposed to help, but help what? They don’t know! The results of the test were polar opposites of what the results were from two years ago, and yet my symptoms have worsen. The doctor did order blood work to be done while I was at her office. A glutamic decarbxylse test. Mayo’s site says that the test is run to determine the “susceptibility to autoimmune (type 1, insulin-dependent) diabetes mellitus and related endocrine disorders (eg, thyroiditis and pernicious anemia). . . A second islet cell antibody, IA-2, is more predictive for development of type 1 diabetes, but less frequent than GAD65 Ab amongst diabetic patients. Insulin autoantibodies also serve as a marker of susceptibility to type 1 diabetes. Distinguishing between patients with type 1 and type 2 diabetes. Assays for IA-2, insulin, gastric parietal cell, thyroglobulin, and thyroid peroxidase antibodies, complement GAD65 antibody in this context. . . Confirming a diagnosis of stiff-man syndrome, autoimmune encephalitis, cerebellitis, brain stem encephalitis, myelitis… Confirming susceptibility to organ-specific neurological disorders (eg, myasthenia gravis, Lambert-Eaton syndrome).” I know that all the above sounds like a lot of mumbo-jumbo, but it is the last part of the quote that I find interesting, “Confirming a diagnosis of stiff-man syndrome, autoimmune encephalitis, cerebellitis, brain stem encephalitis, myelitis… Confirming susceptibility to organ-specific neurological disorders (eg, myasthenia gravis, Lambert-Eaton syndrome).”
IF there was evidence of some neurological issue(s) that could not be explained via the normal route of testing (MRIs, EMG, etc) and yet you have a blood test that looks at the anti-bodies within the patient’s body that can confirm a specific diagnosis why would you simply tell a patient, “I don’t know” when you have not exhausted all possible tests?
The other test that I get to have is a CSF test, otherwise known as a spinal tap, and I don’t mean the movie (which sucked by the way). Hopefully between the two tests they can get an answer other than, “I don’t know.”
I know that I am being treated at a “teaching” hospital, and that many of the doctors are doing their residency or fellowship studies, but as a patient it is frustrating to keep hearing the same message over and over. Perhaps I have watched too many episodes of House, and expect doctors to work in a diagnostic team rather than a compartmentalized environment. Or maybe I just have no patience after two years of seeking answers.
Dr. Owenby, the cardiologist, on the other hand was full of encouragement. He went over the various tests they did on my heart, yes I do have one despite what some may say. The results were promising. The PVCs that I was experiencing have lessened due to the medication they put me on, and now only become problematic when I am under a lot of stress, like seeing the neurologist. He told me that I can increase my medication if the PVCs start to become a problem again, but to call and let him know. He also said that they could be caused due to all that is going on neurologically, since there is a problem within the electrical wiring of my body. At least for now I don’t feel like my heart is taking a break every half-dozen beats or so, and that is a definite improvement. But it would be nice to have a resolution to all the problems with my internal wiring, and perhaps stop them completely.
So here we sit again, not having any real answers. Fifteen years ago I had to have injections into my spinal column to treat herniated thoracic disks, and afterwards had a massive headache for two days. I know that any intrusion into the spinal column can cause leakage, and the reduction in spinal fluid makes you feel like you got slapped upside the head, so I am hoping for the best, but expecting the worst.
One thing that truly puzzles me is something that the neurologist said while we were discussing the brain MRI results. She said that there was a minor lesion on the left side of the brain, but that she did not think it was an issue. Since the majority of my problems have become right-sided, and the left side of the brain controls the right side of the body, wouldn’t a lesion be cause for concern? But what do I know? I’m only the one who is having to deal with the daily problems, and just because I am the one experiencing the tremors, headaches, numbness and pain predominately on the right side, blurred and now (at times) double vision, muscle weakness, and a host of other issues I probably don’t know anything. After all I am not a part of the “MDeity.”