When you get ill, you visit your doctor. S/he is there to take care of you. Well that’s how it used to work. I remember a time when a visit to the doctor was a good experience. You got empathy and expertise from someone who cared; a prescription if that was appropriate and an appointment for your next visit to monitor progress and / or to take alternative action if you were not getting better.
When you have Chronic Fatigue Syndrome (CFS) / ME it’s a different story.
I have been attending the same GP for 20 years. He had always helped sort out my various ailments and with much empathy. But when my early symptoms of CFS/ME began to appear it was a different story. Yes the empathy was there but as the number of visits grew, it became clear that he was at a loss to know what was wrong with me (or at least that is the way it came across). A variety of prescriptions were tried without success. There was no suggestion of follow up visits. I had to initiate each of these as my pain and frustration grew. He did eventually refer me on to a rheumatologist, which started me on a journey of discovery.
I still visit the same GP, albeit on a less frequent basis. Since my formal diagnosis of CFS/ME back in 2012, he continues to be supportive and always expresses the wish that he could do more.
A very practical lady who has clinics in a number of locations in Dublin. It always feels a bit strange when you are physically ill, visiting a medical person for help and they don’t examine you. Well not physically. Lots of questions over 30 minutes and then a programme of tests. I spent three days in hospital having all these tests. I remember waking up from an anesthetic and seeing this vision in white, in my room. For a brief moment I did wonder if I had passed over! But no it was herself, the rheumatologist with some good news… “You don’t have any signs of cancer”. I didn’t even know they were looking for that. I met with her a few days later in her fine offices in the Clinic and she had established that I probably had Polymyalgia and prescribed steroids which should relieve the pain within a few days. (They did, a little.) But she was not happy. She felt there may be other factors involved and that’s when she suggested I go and see an eminent Neurologist.
I don’t know about you but the idea of meeting a neurologist was a big thing for me and not all good.
“The neurologist treats disorders that affect the brain, spinal cord, and nerves….”
Was there something wrong with my brain? Or maybe they thought a lot of this was in my imagination?
Putting all fears aside I went to visit this eminent man in his “suite” at the private clinic. That was on 21st May 2012. My wife (and trainee carer) came with me for support.
We didn’t have to wait long. His previous patient left, we got the nod from his secretary and found ourselves sitting in front of a “neurologist”. The room was well furnished with a mahogany desk on which sat a computer (of questionable use). In one corner was an examination table, which rested uncomfortably in the corner of my eye. Behind the desk was “himself”.
He asked me to outline my symptoms whish I did and commenced an examination. But it was not what I expected. He asked me to stand up facing the window (and the lovely view of Dublin Bay) and to close my eyes. He told me to walk on the spot for 1 minute with my eyes firmly shut. When I was finished he told me to open my eyes and to my amazement Dublin Bay had disappeared. Well it hadn’t really. I had rotated 90 degrees to the right, unknowingly and now faced a bare wall. That was a bit strange… but on with the examination. He asked me to lie on the bed, on my side (memories or my last health check ran through my head) and waved his finger over and back in front of my eyes. It was all over in a flash. Back to his desk for the diagnosis.
“You have an inner ear imbalance” he said. “Your eyes are operating like windscreen wipers with one broken blade. They’re out of sync.”
I’m going to refer you to a Vestibular Physiotherapist. Come back and see me in seven weeks. “
My self and herself were already in awe of meeting an eminent neurologist and were not about to question his diagnosis, recommendation or suggested next appointment. We left his suite room and sat with his engaging secretary. “That will be €250 for your first appointment and we will see you again on 9th July”. The words flowed from her lips like a practiced prayer.
For the next seven weeks I attended the vestibular physiotherapist twice a week. In addition to “dry needling physio to release badly trapped muscles, I walked with my eyes shut up and own the waiting room, followed my moving finger with both eyes, along with a variety of pushing exercises against the wall and door jams. I did this routine on a daily basis between sessions too.
Then it was time to see the neurologist again. My appointment was for 3pm and once more I did not have to wait very long. When we entered his office there was one file on his desk, (my file I presume). He welcomed us and opened the file, briefly. “Let me see now… (closing the file almost as quickly as he opened it) …how are you?”
I explained that my headaches continued, as did the pain in muscles throughout my body. I was continuously exhausted and was not sleeping well. He asked if there was any improvement since I saw him last. I tried to find something and suggested that my headaches might have improved a little. He looked happier and enquired as to how much they had improved. Again I struggled for an answer but with a little prompt from himself, I suggested 30/40%, maybe. “Excellent” he said. “Focus on the positive”. (It was obvious throughout this short session that his mind was elsewhere and he had something else to do, soon.) “Come back and see me in 6 weeks” he said and “keep up the physio”. Is that ok? He had almost left the chair when I replied “No that’s not OK?
Neurologist: Why, why is that not ok?
Me: Because I want to know what is wrong with me.
Neurologist: (sitting back down) I see. Well you still have bad muscle pain, you suffer from bad headaches but they are improving, you aren’t sleeping well and your are continuously exhausted.
Me: But I told you that when I came in. I want to know what’s wrong with me. Could it be CFS /ME related?
Neurologist: I don’t know what’s wrong with you. That’s not my area of expertise.
Me: Do you know of anyone that might know?
Neurologist: (Pulling a sheet of paper from his drawer he began to write) Yes, I should refer you. This is an immunologist who is regarded as an expert in these matters. I will arrange the referral right away.
Me: Thank you for your time
We left his office and once again found ourselves in front of his engaging
secretary. “That will be €180 for your second visit and can I put you in
for your next appointment?” she enquired. Disappointment registered on
her face as we told her of the “referral stuff” we had discussed with her
eminent boss and we took our leave.
My wife and I did not speak for the next 10 minutes as we moved to a
place where we could have a cup of coffee and come to terms with or at
least understand what had happened. It was one of those moments where
you were totally unprepared for what happened but had the audacity or
perhaps courage to stand up for yourself and question someone as
eminent as a neurologist.
We felt we did the right thing and also thought of the many others in our situation that would continue to visit their specialist, without question!
I eventually met with my Immunologist on 4th September ( 9 weeks later) and that’s different story. A better one.