Question started immediately and Specialist was ticking off his computer screens. He didn’t ask for the questionnaire.
I realised my speech was struggle and was talking as if I was heavily intoxicated. I excused couple of times that I usually don’t speak like this. My cognitive function was already struggling. So, I looked in the air or closed my eyes, instead of looking at Specialist in order to answer questions as accurate as possible. I was just concentrating on answering and there was no capacity left to think or feel.
I tried to get the filled questionnaire out while he was asking questions. I stopped to answer. He noticed it and encouraged me to show them. There are three parts of documents that I prepared for this meeting. One was the filled questionnaire, the second was the appendix to the questionnaire because I needed extra space to answer some of the questions, the last was ME: ICC with my self-check and explanation to each criteria. I had more documents to show him, such as abnormal ECGs while I was in OI distress, letters from Bond Uni Research Team with numbers of each blood collection analysis, a copy of disability parking permit application with Myalgic Encephalomyelitis as my condition, and etc…
He went through all documents very quickly, then went back to letters from Bond Uni. He asked what they found. I explained that they just gave me numbers and I cannot translate them. He looked them again quickly and said my immune system is low. As simple as that! .
He asked about allergies. I answered with grasses, mould, dust, pollen, and then, hesitantly added “temperature change”. He looked at me. Well, I didn’t think “temperature change” is a common allergen, but it triggers histamine secretion and I end up with all itchy, in-pain, swollen pink skin, and little red and blue hives. It is allergic reaction to me… Antihistamine cream helps to ease the discomfort.
He might thought I was testing him. But, I was just telling the fact, not knowing where this fits in medical terms. He quickly explained it is “OI” not “allergy”. That was my enlightening moment. I was also surprised to hear “OI” from a doctor… To me, “OI” had become tabu subject with the previous caring GP.
During the discussion, I mentioned I had MRI. He asked if the result was okay. Well…, Neurologist said I didn’t have MS. He shook his head. I know Neurologist should know better… However, all neurologist at the hospital didn’t know about ME/CFS. To them, ME/CFS doesn’t exist.
I remembered how it was handled. Since they don’t know ME/CFS, they cannot pick up anything even if there is evidence of ME/CFS right in front of them. I also had to argue and refuse his referral to psychiatrist. I’ve been there, done that, and I was greatly harmed by psychiatric “treatment”. Neurologist suggested my problem was “Functioning Disorder”. I knew what “Functioning Disorder” is. It used to be called “Conversion Disorder”. It is a mental disorder made up by psychiatrists and there is no evidence it exists. I stood firm and refused to see psychiatrist. I was protecting myself from getting further damage by them. Neurologist sarcastically asked what I was going to do. That should be the patient’s question, not specialist’s. I just answered that I would wait for researches and medical practitioners would come up with some solution.
Back to the present. Specialist did a few quick physical examinations. He felt my pulse on both wrists. My oxygen saturation was dropped to around 95%. He knocked on my joints with reflex hammer. Each knock triggered uncontrollable jerk at different places in my body as if I was getting electric shock. (It was because my body was overly exhausted and struggling.) I tried to joke I was over reacting. He checked ears quickly. Then listened to upper chest.
He asked if my condition is still progressing. Actually, this is my question, too. I explained that my case was gradual onset since childhood. Then, when I started treatment for misdiagnosed depression, it progressed rapidly. I don’t think it’s progressing now, but it feel like I am still slowly getting worse. The reason why I feel I am still getting worse could be because I’m starting to acknowledge and accepting my limitations. I’m still slowly learning that many of the things I feel I can do are practically beyond my limitations.
He double checked if there was no virus involved in my illness progression. As far as I could see, my answer was no. The trigger for my ME/CFS was antidepressant. When I was a toddler, I had a severe case of measles and it’s possible that it caused the underlining damage. But, I didn’t mention about this because I wasn’t sure if it is relevant to my current sufferings and disability.
Then, he told me if I saw a cardiologist. I said No. He looked at me again. Yes, I had some test done, but I didn’t see them or had appointment with them. He said I must have my vascular system checked. He started to write a referral to a cardiologist. I asked if the cardiologist is familiar with Orthostatic Intolerance. He said yes. Then, quietly said there is another one at Wesley Hospital. My whole body became all ears. I mentioned I heard about Dr W from Wesley Hospital who has a very good knowledge about cardiovascular problems with ME/CFS. Specialist asked if I wanted to see Dr W instead. I asked if it’s possible for me to request. He said yes, and changed the referral to Dr W. I was surprised how simple it was.
When he finished the referral letter, he said I would feel better once I start treating OI, which was another surprise. It was so nice to hear a doctor confirming my theory.
Conversation and discussion was very smooth when we both have the same understanding and knowledge about my problems. Well…, I know Specialist’s knowledge is much better than mine, of course.
Before I forget, I asked if it was possible for me to have an official Myalgic Encephalomyelitis diagnosis. He quickly asked if I know the difference. I answered that CFS is an umbrella term (so that many things can go under that diagnosis, such as ME, Lyme, rare diseases, undiscovered diseases, and etc). And ME is more specific. He said ME is neurological. I also explained that I want to dodge stigma, misunderstanding, and mistreatment coming from CFS by having the official diagnosis with ME.
It was not a problem. He typed Myalgic Encephalomyelitis in the file while I was looking. He asked enough questions to give the diagnosis without checking my prepared self-check list. Another surprise…! He thought about it a little and put Chronic Fatigue Syndrome separately as well. I didn’t mind because I believe it keeps treatment options open for me. So, I have two separate diagnosis with ME and CFS. I felt it was a great achievement.
He also printed out pathology test request. He added a couple more blood test by hand and also directed the result to go to Dr W as well. Cool!
That was the end of the meeting. I asked what I should do next. He said, “Come back after the appointment with Dr W, then we will talk about TREATMENT”. This made me smile. The sound of “treatment” was music to my ear. And it also confirmed that he accepted me as his patient.
I quickly gathered my stuff to leave his office. He stopped me and encouraged to put my jacket on while we were in his office as it would be cold outside. I accepted his kind suggestion. He was not in rush to usher me out of his office. He is a kind doctor as well.
As he wheeled me out, I wanted to mention that I listened to his recent radio interview . But, I decided not to as I was too exhausted to say anything anymore. He left me at the wheelchair section of the reception counter. I thanked him one more time.
I was a little mystified. I just talked about ME, OI, POTS, and CFS with a doctor as if we were talking about weather…
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