How Do You Ensure You Receive The Correct Medical Support You Need?
Sep 04, 2022
Knowing how to obtain the correct medical diagnosis & treatment for yourself or a loved one can be a challenging experience & one I see my clients struggle with too. My own experience with glandluar fever (mononucleosis or Epstein-Barr virus) was a classic example of health care gone wrong which has negatively impacted my health and well-being & will continue to do so for the rest of my life. I'm going to share my story with you and then some practical tips so you can empower yourself with the information you need to stay healthy and pain-free throughout your retirement years.
Running my dance school was a high energy occupation that culminated in an annual concert that had been 12 months in the making. Each year the production was bigger & better than the one before and involved hundreds of hours of preparation. As much as I adored running my dance school feeling exhausted and burnt out was normal for me at the end of every year and something I accepted. This particular year however I hadn't bounced back 2 weeks later. Despite doing all the usual fun and relaxing activities, I felt incredibly sick. My eyes were swollen and almost closed, I had abdominal pains in 2 unusual places, headaches and I was exhausted. Off I went to the see my doctor for some answers and this is where things went horribly wrong. After waiting more than an hour in a packed reseption area, suddenly I was the only patient left. Finally, the owner of the practice finished with her last patient of the day and saw me waiting. It was almost closing time and my doctor was still with another patient so she told me she would see me instead. My instinct which I ignored was to wait for my own doctor who I trusted but not wanting to inconvenience anyone, I went with her. Having recently been engaged to be married with a wedding scheduled the following year I was told I just had a case of pre-wedding nerves and to go home and make a list of everything that was worrying me, put it in a jar and forget about it.
Running my dance school was a high energy occupation that culminated in an annual concert that had been 12 months in the making. Each year the production was bigger & better than the one before and involved hundreds of hours of preparation. As much as I adored running my dance school feeling exhausted and burnt out was normal for me at the end of every year and something I accepted. This particular year however I hadn't bounced back 2 weeks later. Despite doing all the usual fun and relaxing activities, I felt incredibly sick. My eyes were swollen and almost closed, I had abdominal pains in 2 unusual places, headaches and I was exhausted. Off I went to the see my doctor for some answers and this is where things went horribly wrong. After waiting more than an hour in a packed reseption area, suddenly I was the only patient left. Finally, the owner of the practice finished with her last patient of the day and saw me waiting. It was almost closing time and my doctor was still with another patient so she told me she would see me instead. My instinct which I ignored was to wait for my own doctor who I trusted but not wanting to inconvenience anyone, I went with her. Having recently been engaged to be married with a wedding scheduled the following year I was told I just had a case of pre-wedding nerves and to go home and make a list of everything that was worrying me, put it in a jar and forget about it.
I did what she suggested and not surprisingly I didn't feel any better. In fact I was actually getting worse. She had told me to let her know how it went so a few days later I made my second mistake. I scheduled another appointment with the owner just as she had instructed me to do rather than going back to my own trusted doctor when I had the opportunity to do so. I wasn't obligated to go back to the owner but felt like I was since she I had already consulted her originally.
On the second visit she tried another approach. She decided I must have a sinus issue even though I didn't have any symptoms other than a headache and a mild sore throat and put me on a nebuliser to administer ventolin. After no relief again, in desperation I went back a third time and she said she could see I was getting worse so she prescribed pencillin based antibiotics. My condition continued to deteriorate and by now I was scared. On the 4th visit I told her I had been researching World Book Encyclopaedias (the Google of the era!) and felt sure I had glandular fever. My great aunt, who was a highly experienced nursing sister of many years, said she was sure it was glandular fever too. The doctor looked at me quizzically and shook her head. She didn't agree and requested a colleague, a renowned diagnostician, come in and physically examine me. Based on the swollen lymph nodes, swollen eyes, sore throat, headache and abdomnal pain in 2 places, what would she conclude? Glandular fever. After her colleague left the room the doctor said she didn't agree at all and to keep taking the antibiotics no matter what. By now I was in a lot of pain, exhausted and wondering if I would ever recover.
On the 6th visit the owner was starting to visibly panic. She then did what she should have done on the first visit. She took a blood test. When I asked her if she thought I had glandluar fever, she said "You either have that or something far, far worse!" She told me to keep talking the antibiotics whatever happened and she would call me with the results in a couple of days. She was sheepish and very apologetic when she called to inform me I had glandluar fever. She again reiterated that I should keep taking the antibiotics no what matter what and rest without moving for 6 weeks. While I was incredibly relieved I didn't have cancer or leukaemia, I was extremely angry that she hadn't listened to me or her colleaague when we both said it was glandluar fever. I had so many indictors of this which should have been red flags for her. She then said according to the blood test my liver and spleen were very badly effected which explained the unusual pains in my abdomen. I was due to fly to the Gold Coast with my dance students for the National Championships in two weeks time but she warned me that my enlarged spleen would burst due to the pressure on the plane and to cancel the trip. Realistically, there was no way I could go anyway but without the correct diagnosis what if I had boarded the plane and my spleen had ruptured? It's a medical emergency that can lead to life-threatening internal bleeding, especially in the confines of a plane!
By this stage I was so ill I could barely walk. I had undulating fevers, migraines and my throat was so sore that swallowing saliva felt like swallowing razor blades. I had to squeeze a pillow each time I swallowed and cried out in pain. Family & friends who saw me at this time looked shocked and dismayed at how ill I looked and I'm sure most of them thought I was going to die. The doctor again told me the most important thing to do was continue the antibiotics. I had to have a blanket across my bedroom window as I could no longer look at light or barely open my eyes. I couldn't eat or sleep because of the razor blades in my throat & getting to the bathroom was a major challenge that took a lot of planning. I was continuing to deteriorate. After another 4 days like this in agony which prevented me from sleeping, in desperation, I went to the hospital emergency room at 2.00 am during yet another sleepless night.
The doctor on duty was outraged and screamed out when he discovered that I was taking antibiotics for a viral infection. He said it would be like swallowing a handful of razor blades each time I swallowed which was exactly what it fell like. He demanded to know the name and phone number of the prescribing doctor. He said it was like adding fuel to a fire and explained why I was so terribly ill. He gave me some medicated mouth wash to gargle with which eased the pain so I could at least sleep and said I should start to improve without the antibiotics. My recovery was slow and I continued to suffer migraines, high fevers every afternoon and evening and absolute exhaustion. Knowing I needed to be well enough for the beginning of the new dance school year was always in the back of my mind and I wondered if I would ever be strong enough to leave my bed. I was told not to move except to go to the bathroom andI had completely lost all my muscle mass. I remember one day sitting up in bed and looking at my legs which were like sticks and bursting into tears. After the 6 week period was over I gradually eased back into walking but quickly discovered my ordeal wasn't over yet. I thought I would vacuum the house but became exhausted very quickly and had to go back to bed. Once I started back teaching dance, I was exhausted most of the time and developed chronic fatigue syndrome, a condition I'm still managing to this day. The misdiagnosis of my condition and the wrong treatment has impacted my health for life. So what can you do to avoid this type of situation & what can you learn from my experience?
Practical Steps You Can Take
In general medical practitioners do an amazing job but they are human and mistakes are made from time to time. The pandemic has only increased the pressure on the medical profession and its vital that you ensure you receive the correct diagnosis and treatment for your condition.
1. Consult with the doctor of your choice. If you are unhappy with the service or advice you are receiving change doctors and keep changing until you are satisfied you are being heard and achieving results. Persevering with the wrong doctor wastes valuable time & can be life-threatening.
2. Ensure you have the correct tests immediately. Whether it's a blood test, xrays or scans unless there is a valid reason why you can't have them, don't delay. Again precious time is lost when you delay diagnostic testing. A simple blood test could have saved me weeks of physical and emotional pain and I may never have developed chronic fatigue syndrome.
3. Voice your opinion about your condition. No one knows your body better than you do. My instincts were correct about my condition and if you suspect you know what is wrong with you insist you are tested for it.
4. Educate yourself about medicines you are prescribed.
I had no internet to educate myself about the medication I was prescribed and whether it was suitable for my condition. Use the internet to check medication uses, side effects, drug interactions and patient reviews to determine if it's the best choice for you and your particular condition.
5. Make a list of questions to ask your doctor if you have a complex condition or are see seeing a specialist who may provide you with a lot of information. Don't be afraid to write the answers on a piece of paper and keep it on file. Alternatively, read the information onto the voice recorder on your phone after the appointment and store it digitally. It's amazing just what you can forget especially if you aren't feeling well. The more information you have the greater the chance you have of ensuring you will receive the correct diagnosis and treatment.
6. If surgery has been recommended for you but you aren't comfortable with this, get a second or third opinion. Many of my clients have done this over this years and there is usually a large variation in advice. Different surgeons use different methods and approaches and some are using the latest research while others are using more outdated methods. Don't just accept the opinion of one specialist if it doesn't sit well with you. You have to be comfortable with your decision and have confidence in your surgeon and the techniques used.
Even though my experience of misdiagnosis occurred more than 23 years ago now, the doctor is still practising at a clinic not far from the clinic I attended all those years ago. Ultimately, I believe medical mistakes like I experienced can be avoided. I blindly trusted this doctor even though alarm bells were ringing all the time that I was being led in the wrong direction. The more responsibility we take for our own health the more empowered we feel and the more likely we are to receive the correct diagnosis and treatment so we can enjoy a happy, healthy life.
My unique online Pilates studio provides another way of taking control of your own health & fitness through Pilates. If you are dealing with chronic pain such as back, knee, hip, neck or shoulder pain, it would be my pleasure to assist you to overcome it and move with ease again. If you are ready to start your Pilates journey contact me at [email protected] to get started. Alternatively, click here to learn more about my online studio and how you can start working with me. It would be my pleasure to assist you on your Pilates journey to good health!
My unique online Pilates studio provides another way of taking control of your own health & fitness through Pilates. If you are dealing with chronic pain such as back, knee, hip, neck or shoulder pain, it would be my pleasure to assist you to overcome it and move with ease again. If you are ready to start your Pilates journey contact me at [email protected] to get started. Alternatively, click here to learn more about my online studio and how you can start working with me. It would be my pleasure to assist you on your Pilates journey to good health!
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