If you had the opportunity to read my previous blog posts about my journey to my diagnosis, you would have seen that it took seven years to finally get an answer. Any answer. As I visited various internet sites I saw that the long path to diagnosis had a common theme. It was not just the illness(es) itself or the bureaucracy of the healthcare decision making system but it was the doctors we saw themselves.
If you have an HMO you are held captive by a gate master for your care A.K.A your primary doctor. Please do not think that I am throwing shade on all primary care doctors. I am not. There are so many that have empathy, compassion and concern. In fact I had a wonderful doctor in New York that uncovered the source of my anemia with a simple question and a basic test. Instead of being told yet again that I have low iron anemia, I learned that I actually have Thalassemia Beta Minor. These conditions are very different and therefore must be treated differently because if I take iron supplements with Thalassemia I can run the risk of iron poisoning. There are other variables but I was about 25 when he actually diagnosed me and had only been my doctor for about two years. One of my regrets with moving to Maryland was that I would no longer have him as a doctor. I am sure that he would have zeroed in on something sooner because he was a great listener and a caring doctor.
So begins my story. I found a doctor and he was pretty good and seemed to be progressive. By progressive I mean that he didn't always push pills but recommended holistic things as well. It seemed that as long things were in his zone of understanding, he was spot on. So when my health started to unravel I sought him immediately. As a gate keeper of the referrals, he saw that I needed a Neurologist right a way when I came in with the blinding headaches. That was easy enough, patient comes in, headaches, refer to Neurologist. The Neurologist could find the cause and then came the Opthamologist, then the Neuroopthamologist, another Neurologist and the band played on! Blood work was ordered and came back fine, except for my Thalassemia. My blood pressure was a bit low but that was it. My MRI, MRA and MRV were fine.
I would go through cycles of bouncing back for a few months and then start the cycle over with the headaches, pain, nausea, vomiting, pre-syncope, etc. again. Each time I went I saw that he was less and less responsive. I knew that something was wrong but he stopped listening. He did just enough to be able to bill my insurance for an office visit (I took medical billing so I know!) and told me that he just couldn't find what was wrong. I was basically going to get my FMLA papers filled out so I can languish at home and be excused from work while I was experiencing these symptoms. This became exhausting in itself. They tested for the big bad things like cancer or heart disease, anything to cure but all was normal or unremarkable. However, I continued to deteriorate.
I went in one day with actually something different and I felt like I had congestive heart failure or something similar. He finally saw that my heart rate was high and my blood pressure was very low. It didn't register initially on the machine and had to be taken manually. Yup, they had to pull out the old cuff and stethoscope. I was referred immediately to a Cardiologist across the hall. Still there might have been something... there might not. Referrals, forms and blood work...oh my.
Well one day, too many I guess, I went in with a new onset of issues and this time he told me that they couldn't find anything wrong and that this was above his pay grade. Around this time POTS was mentioned as a possibility and then he suggested that I see a Psychiatrist because thought that I could be depressed. Granted I would cry at times due to my pain and total dismissal of my pleas for help. I assured him that my quality of life was great but that I was in pain and I needed help. Then he started to tell me that I was depressed again. This time I was mad. I told him that if he didn't know that he should just say so and that it was unfair to label me as depressed as a last resort diagnosis. I also said that I was life is great until I come here and get dismissed. Something was wrong but you don't know then just say it.
It was a tense appointment and I was furious. He was resolved that because HE didn't know what was wrong that it had to be in all in my head. This is another common thread among chronic illness sufferers. They reported that they were told to see a Psychiatrist and some did to just say that they weren't crazy but in pain. Co-pays for Specialists are $30 with my plan and I refused to waste it on something that was not needful. He wrote that nonsense in my medical records and I fought back. I wrote in the patient portal a Dear John letter of sorts. I fired him. I said that his limitations with what was actually going on with me, his refusal to seek other options and his lazy doctoring diagnosis as lazy made it impossible for us to continue this relationship and I refused to see him any further.
I am not sure if it bruises a doctors ego if they can't solve the medical puzzle of the illusive diagnosis. I used to watch House and I saw that it bugged him if he couldn't get the answer. I wished that I had a real Dr. House to tell me that I had sarcoidosis or lupus or necrotizing fasciitis. I just wanted something to point to why I was going through all of this. However, it appeared that he just became disinterested and it showed. Then followed the lazy catchall diagnosis. Thankfully for me, he was in a group of doctors and he responded to my letter and agreed that it would be best for me to see someone else, like I needed his permission. I was pushed off to a Nurse Practitioner who I used as a referral machine. I found the doctors and made the appointment then called her to send them a referral. Less than a year later I was diagnosed but not before my Cardiologist was tainted by the primary's comments. He may get fired too but I haven't seen him for different reasons and that is another post coming.
If you feel that you aren't getting help from your doctor there is no need to keep going and paying for services that you are not receiving. They actually work for you not the other way around and they are not always right. I wouldn't recommend firing people left and right because you don't agree but you are entitled to ask questions and to help direct your care. You have the right to a second, third or fourth opinion. You don't have to feel like you are being held hostage either. They will be fine and even if they get offended, oh well. You have to be your own advocate and your own voice.
One day at a time.