Sometimes clichés are just a little too accurate; for example, to say doctors are just practicing medicine is sad but true and that is what brought about my writing of this particular article. Since I expect that there are new readers here that do not know the back story to my adventure in medicine, I will give a quick review. If you would like more details, you can click the link to the RAD Caregiver category.
In a nutshell; my girlfriend Tanya was diagnosed with Rheumatoid Arthritis (RA) in 2004. In October of 2011 Tanya moved from Indiana to California and my life of living with RA began. One major change in my life was that I now had to start doing something I have most of my adult life avoiding; I started going on visits to various doctors. In case there is some confusion, I do not go to the doctor for myself. I tried it a few years ago but the experience was so frustrating that I said screw it. I admit, I was a little surprised when I first started going with Tanya on her visits to several doctors and specialists in Southern California. My initial impression with each doctor I was introduced to gave me the impression that each of these new doctors was a qualified, caring professional that was going to do their best to help Tanya. Unfortunately, as time went on, I came to the realization that there was one doctor that seemed to be basing his suggestions on kickbacks from a pharmaceutical company while the others seemed to be at a loss as to what Tanya’s problem is, because every “test” they ran seemed to come back normal; it was almost as if they were suggesting that she did not really have RA. Rheumatologists would send her to neurologists and thyroid doctors. Everyone that tested her said there was nothing wrong that they could see, and her complaints essentially were not typical RA symptoms. Various drug combinations were tried and only through Tanya’s insistence was a combination of drugs given to her that relieved her pain, quite significantly at that. The thing is, the new drug cocktail had side effects that required even more pills to be prescribed and some of the side effects got bad enough that she had to delay taking her primary pain relief cocktail. I started to notice Tanya experiencing the same frustrations that caused me to give up on doctors, but she does not have that luxury.
When Tanya lived in Indiana she had the same rheumatologist from the day she was diagnosed until she moved. I would venture to say that the thing she liked most about him was that he listened to her, talked to her and offered options. When Tanya meets a new specialist she brings in a folder about 3″ thick that contains a very detailed history of past tests, treatments and research that she had done on her own. While each doctor took the documentation it was pretty obvious from subsequent visits that no one had bothered to take a cursory glance at the information she had provided them. What I came to realize was that it did not seem to matter if she was dealing with a doctor with a private practice or a myriad of specialists at Cedar-Sinai or Providence Little Company of Mary; the only way Tanya was going to get any help is if she helped herself and literally guided her medical providers by the hand by insisting on the tests and prescriptions she needed.
I admit, when we first started going to Cedars-Sinai I was pretty impressed with their streamlined efficiency. I had never gone to an appointment with a doctor where I was actually in the room talking to the doctor within five minutes of the appointment time. Blood tests were done across the hall and we never waited more than 10 minutes. I also noticed that the rheumatologist took the time to physically touch Tanya’s extremities and sore spots rather than just look at the chart and say it could not be related. That is not to say that the Cedars-Sinai did not tell us that certain pains could not possibly be related to RA, because they did and would Tanya off to see another specialist that would stick her and x-ray her and test seemingly everything only to come back with negative tests. To the Cedars-Sinai rheumatologist’s credit, when Tanya asked for certain drugs she got most of them and her pain has eased greatly. Like I mentioned above, there was this issue about the side effects of this new cocktail. Tanya needed a new prescription of B12 but the doctor “had no opinion” on its effectiveness, so they refused to provide something that Tanya had been taking long enough to know it made a difference.
Cedars-Sinai had outlived its usefulness, they were just passing Tanya around like the cash cow she was and refusing to prescribe B12 was pretty much the straw that broke the camel’s back. Since she needed to find a primary care physician anyway, she opted to try Providence Little Company of Mary Medical Center since they had every field covered that she required. What a nightmare.
Apparently Providence has a new system where all the doctors can see what other doctors have done, and prescriptions can be filled and all the neat things that technology is supposed to provide. The problem is that the software running it is not user friendly, so the office staff and doctors do not know how to use it for anything out or the ordinary. For example, a pill that you are to take twice on the first day, then one a day for the next six days is apparently impossible to request. The doctor gets frustrated and prescribes 15 but the pharmacy refuses to fill it because they know that is not how it should be used. On top of that, you have secretaries that are making decisions that should be reserved for a doctor simply because the doctor “has never done that before.” I could go on, but you probably get the idea, especially if you ever experienced it yourself. But it gets better . . . worse?
A couple months ago one of Tanya’s nieces had a baby; apparently in the last 10-15 years they started doing gene testing on newborns for different things that might cause them issues later in life. Tanya’s nephew had a mutated gene that causes a Vitamin B7 deficiency, and they would have to run tests to find out what side of the family it came from. Tanya did some research on what a B7 deficiency can cause and became concerned because if the problem came from her side of the family, her children could have inherited it as well. She immediately contacted her primary care physician to have blood tests ran that checked for vitamin levels. After a month of constantly calling to get her results, they informed her that “the tube had broken” at the lab and she would have to go on again. She went back, gave more blood and was assured the results would be ready in two days. A month later Tanya got her results via a telephone call from a receptionist; Tanya’s B7 levels were low. The doctor’s receptionist said the doctor would be calling after she had figured out a treatment plan. That was Friday; it is Monday evening and we have had no call. Fortunately, Tanya is not the type to wait around. She found a clinic she could walk in and get a B12/B7 combination shot for $30. She then found some over the counter supplements and is powering them down while she waits for the doctor some more.
The interesting thing about this is that many of the symptoms Tanya has are the same as a B7 deficiency causes. What is even more interesting is that many of these symptoms have subsided since she got the shot on Saturday afternoon. In fact, her symptoms have eased so much that she has stopped taking the multitude of drugs that she has been taking for years. Now we have to wonder, has she been misdiagnosed for the last 9 years? Was this the same problem that caused her mother years of agony and eventual death? I was a little surprised to hear that never in the 9 years that Tanya has been being treated for an auto-immune disease, not once has anyone even thought to check for her vitamin levels.
I am sorry, but this experience has done nothing to make me feel more confident about those “practicing” medicine; if anything, I will let Tanya treat me for any ailments I may have. She seems to get results.