My brother’s diagnosis of Dysautonomia got me thinking.
I have obvious Dysautonomia symptoms. I strongly feel Dysautonomia is a large part of my disability. But I haven’t been diagnosed. Every time, the ex good GP tried in-office-test, it always turned out my autonomic nervous system was fine. In the end, I stopped mentioning it because it made me feel like I was lying. I tried not to think about it. All my symptoms and disability remained as “mystery”. My mistake was that I focused on blood pressure, not pulse.
When I was a child, an Internist made me jump up from the chair and diagnosed me with Dysautonomia. There was no follow-up appointment nor treatment. He told my mother that I would grow out of it. Here in Australia, my ex good GP told me it was not necessary to jump up, so I stood up slowly and carefully from the chair. And lying down was not the part of the in-office-test.
Just to satisfy my curiosity, I did a simple experiment.
I checked my pulse while I lie down, and then slowly got up. My pulse remained the same. Then, I lay down again, checked the pulse and got up quickly. To my surprise, my pulse immediately shoot up from 64 to 94. It didn’t take 3 minutes. If I kept standing, my pulse would go even higher. But I needed to lie down immediately because of asthenia . This experiment kept me bedbound for the rest of the day and triggered ME/CFS flare up.
I just witnessed the measurable sign that I clearly have Postural Orthostatic Tachycardia Syndrome (POTS). This fact empowered me.
Now, I’m seriously considering to see the GP who is regarded as ME/CFS specialist in Qld. He could refer me to the cardiologist who is familiar with ME/CFS related heart problems and Dysautonomia. I may be able to try some medication…
I know that the diagnosis of Dysautonomia wouldn’t give effective treatment or practical support. I basically have the same combination of complicated symptoms. However, I hope this diagnosis could stop people thinking that I’m faking a serious illness and disability. Since I lost the good GP, I realised how deep and bad the stigma against ME/CFS is.
My problem is that I have to find someone to drive me and push me in wheelchair to see the Specialist GP. I checked Google Street View, and I know it is impossible for me to visit the surgery without an assistant…
In a meantime, I need to focus on everyday living. I must go to the Chemist in the next couple of days to fill prescriptions. Then, I need to clean my place for Estate Agent inspection early next week. These tasks will keep me bedbound for a while.
At this stage, having an appointment with the Specialist GP is my dream. It is still nice to dream about it, instead of drowning in the sea of misery and hopelessness.
===
Some useful readings:
Diagnosis: Orthostatic Intolerance (OI) by CFIDS Association of America
Orthostatic Intolerance and Chronic Fatigue Syndrome by Dr D Bell at ProHealth, written on 8 February 2012
Hypocapnia and Cerebral Hypoperfusion in Orthostatic Intolerance by American Heart Association, published in 1998
A Simple Test for Orthostatic Intolerance by David S. Bell, MD, FAAP by Phoenix Rising
Dysautonomia: A family of misunderstood disorders by Richard N. Fogoros, M.D. at About.com Guide (Updated November 13, 2011)
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My brother’s diagnosis of Dysautonomia got me thinking.
I have obvious Dysautonomia symptoms. I strongly feel Dysautonomia is a large part of my disability. But I haven’t been diagnosed. Every time, the ex good GP tried in-office-test, it always turned out my autonomic nervous system was fine. In the end, I stopped mentioning it because it made me feel like I was lying. I tried not to think about it. All my symptoms and disability remained as “mystery”. My mistake was that I focused on blood pressure, not pulse.
When I was a child, an Internist made me jump up from the chair and diagnosed me with Dysautonomia. There was no follow-up appointment nor treatment. He told my mother that I would grow out of it. Here in Australia, my ex good GP told me it was not necessary to jump up, so I stood up slowly and carefully from the chair. And lying down was not the part of the in-office-test.
Just to satisfy my curiosity, I did a simple experiment.
I checked my pulse while I lie down, and then slowly got up. My pulse remained the same. Then, I lay down again, checked the pulse and got up quickly. To my surprise, my pulse immediately shoot up from 64 to 94. It didn’t take 3 minutes. If I kept standing, my pulse would go even higher. But I needed to lie down immediately because of asthenia . This experiment kept me bedbound for the rest of the day and triggered ME/CFS flare up.
I just witnessed the measurable sign that I clearly have Postural Orthostatic Tachycardia Syndrome (POTS). This fact empowered me.
Now, I’m seriously considering to see the GP who is regarded as ME/CFS specialist in Qld. He could refer me to the cardiologist who is familiar with ME/CFS related heart problems and Dysautonomia. I may be able to try some medication…
I know that the diagnosis of Dysautonomia wouldn’t give effective treatment or practical support. I basically have the same combination of complicated symptoms. However, I hope this diagnosis could stop people thinking that I’m faking a serious illness and disability. Since I lost the good GP, I realised how deep and bad the stigma against ME/CFS is.
My problem is that I have to find someone to drive me and push me in wheelchair to see the Specialist GP. I checked Google Street View, and I know it is impossible for me to visit the surgery without an assistant…
In a meantime, I need to focus on everyday living. I must go to the Chemist in the next couple of days to fill prescriptions. Then, I need to clean my place for Estate Agent inspection early next week. These tasks will keep me bedbound for a while.
At this stage, having an appointment with the Specialist GP is my dream. It is still nice to dream about it, instead of drowning in the sea of misery and hopelessness.
===
Some useful readings:
Diagnosis: Orthostatic Intolerance (OI) by CFIDS Association of America
Orthostatic Intolerance and Chronic Fatigue Syndrome by Dr D Bell at ProHealth, written on 8 February 2012
Hypocapnia and Cerebral Hypoperfusion in Orthostatic Intolerance by American Heart Association, published in 1998
A Simple Test for Orthostatic Intolerance by David S. Bell, MD, FAAP by Phoenix Rising
Dysautonomia: A family of misunderstood disorders by Richard N. Fogoros, M.D. at About.com Guide (Updated November 13, 2011)