Seeking a Second Opinion About My Systemic Scleroderma

Seeking a Second Opinion About My Systemic Scleroderma

Scleroderma and the Ordinary Girl

I’m going to fess up: sometimes I Google my symptoms.   

I know it’s not a sensible thing to do, especially when I come across a website that goes into details about disease progression and prognosis. After all, each case of scleroderma is different.

While I realize it’s not a good idea, unless I am using a reputable well-researched site, sometimes I get desperate. When I have a particularly distressing symptom, I can’t seem to help myself.

Just before Christmas, I found myself online, combing the internet for information to help me understand why my breathlessness and other related symptoms were getting worse. I did this despite reassurances from my cardiologist.

On one particularly bad day, I emailed my rheumatologist who is my primary care physician. She was on holiday but, in her absence, recommended I see my general practitioner (GP) as soon as possible.

I like my GP; he has a decent understanding of systemic scleroderma, and he keeps up to date with my progress by reading the letters he receives from my specialists.

Having described my symptoms — and I didn’t hold back — he looked me straight in the eyes and suggested I get a second opinion.

Wow! His response blew me away; I hadn’t expected it.

Initially, I felt uncomfortable about the idea. I had been referred to my current cardiologist by my rheumatologist several years ago. She is an extremely meticulous rheumy, so I don’t question her referrals — and besides my cardiologist was always so friendly.

Despite my unease, I listened to the small voice in my head alerting me to my progressive physical symptoms. I didn’t hold out much hope of solving my medical mysteries, but my GP’s response had confirmed my suspicions.

My new cardiologist was insightful and thoughtful as well as conscientious, rigorous, and comprehensive. I am currently undergoing in-depth investigations, and we are already finding answers.

While my first cardiologist had been amiable and reassuring, looking back on my consultations with him, I realize that we had spent a lot of time engaged in friendly small talk with little effort made toward more complicated investigations.

We don’t often understand the dysfunction of our situation until we have something with which to compare it. Had I realized what a difference a curious and enthusiastic doctor would make, I would not have spent the past two years suffering without understanding.

I’m still not convinced that Googling medical websites is helpful. However, I can say that there is something to be gained by listening to your inner voice and following up on this with confidence. I’m pleased I was brave enough to go for that second opinion.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.
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I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.

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