When It Takes Trial and Error to Find the Right Doctor
When diagnosed with something, you expect your specialist to be an expert in the condition, treatment, and quality of life. It can be extremely difficult to find a good doctor who not only can help you medically, but has a personality that works well with you personally. You expect to have a visit productive in finding the cause of your illness and an effective treatment in order for you to start feeling your best again. Most people with lupus, and other autoimmune disorders, don’t find this to be the case. It can be extremely difficult to get a diagnosis and especially hard to find someone who works for you to find the correct treatment specialized to your own needs.
In February 2015, at age 17, I had my left kidney removed due to the poor function and pain it caused me. I thought the worst of my health struggles were over and for 10 months I finally was healthy. It wasn’t until December 2015 that I started to have extreme fatigue and a headache, which lasted for months with no explanation. I continued to see doctors who had no answers or urgency to figure out the cause.
In March 2016, things got worse. I had significant pain and swelling which came on suddenly in my left leg to accompany the other symptoms – prompting many ultrasounds which were all negative for a blood clot. It was not until I saw a neurologist for the headaches that I had a positive anti-nuclear antibody and anti-centeomere B test. These numbers have continued to be positive and have started to be accompanied by more antibody tests over the past two years. I have seen numerous specialists from rhuematologists to cardiologists, and neurologists, etc. It takes so much trial and error to find a physician who you feel comfortable with. At this time I am struggling to do the smallest daily tasks and I am still looking to find someone who be aggressive in my treatment and acknowledged the severe lack of my quality of life.
All of this being said, here is my advice on finding the best doctor for you and your situation.
I dread going to the doctor now given the amount of let downs I have experienced whether that is the difficulty of finding a doctor who doesn’t dismiss it as being in your head or something who sees the severity and will actually treat you. Treatment that work well for one person, gives another terrible side effects or do not work. Finding tmedication to relieve your symptoms can be a very long process of ups and downs through trial and error. Often it is frustrating, and you may end up feeling worse than before you started your medication as a side effect.
Here are things that have worked for me to help doctors see every thing I experience daily when not in the office so that they truly see and can better understand my symptoms.
1. Write down your symptoms.
A lot of the time, even when not feeling well, my symptoms may not be as bad as when I made an appointment and this typically results in them thinking I am being dramatic, or they believe my medication is working when it is not. It can be very important to document your symptoms between all of your visits in order to have a true representation of everything you have dealt with so they have a better picture of daily life for you.
2. Take photos!
This is something I can not stress enough and quite possibly my best tip. A lot of times I have a butterfly rash or lesions from vasculitis. These come and go at random times and typically I do not have them for a doctor to see on my body. By physically documenting the lesions and how they look, it provides my physician and accurate representation of it so they are aware of it, rather than just my description, which may not be perfectly accurate.
3. Write down your questions you need to ask about your disease, medications, and side effects you are dealing with.
Brain fog is a pain and when I don’t write things down or document in some way, I forget to ask important questions that I have thought of.
Having a good relationship with your medical team is very important. I have been to many rheumatologist and still don’t feel that they are truly listening and taking me seriously when I express issues or ask about any additional medications we could add. I left one of my rheumatologists after the office completely mixed me up with another patient and caused a major scare for myself and my family. I am thankful I have a fantastic internal medicine doctor who sees the severity, and who is concerned and taking action to actually try to help me. Most doctors have just told me they can see something is wrong, but aren’t sure what it is and most don’t seem to want to have to work extra on a more complicated case in order to help me.
Handling a disease can be very time consuming with all the doctors you need to see constantly and the struggle to find the treatment that works best for you. I hope that these tips help you and also have you insight on my life so you know you aren’t alone in your fight.
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