I had my very first Neurologist appointment on Wednesday at Logan Hospital.
My GP asked me if I needed the Ambulance Transport for this appointment. I said “No”. I thought Logan Hospital is more approachable than Princess Alexandria Hospital, where I had EEG. I also have wheelchair now, so I naively assumed that I could handle the visit by myself. BIG MISTAKE! I’ll request the Ambulance Transport next time.
Prior to the appointment day, my day and night cycle was in reversed hour. I woke up around 9 pm the night before. If I didn’t have an appointment on Wed, I would probably fall in sleep around 10 am the following morning. So I knew I shouldn’t sleep until the appointments in the next day are all over. I need lots of time to prepare. I am extremely slow. I need to rest between preparations. I sometimes fall in transient paralysis or sleep paralysis when I sleep or rest long time. When I have a place to go or things to do, this is very inconvenient condition. The only way I can be sure to avoid it from happening is not to sleep at all.
I was stupidly anticipating that something good would come out from the appointment. Being ME/CFS is classified as neurological condition, it was fair to assume that a Neurologist could offer something to treat the condition. Since I have extremely good luck with my current GP, I was even greedy enough to hope that the same goes to the Neurologist.
I arrived at the disabled parking spot in the hospital’s car park early enough. Then, I stared at the distance and obstacles between the car park and the side entrance of the building. (Why the disabled parking spot is not right in front of the building entrance?) I had to cross two streets, and between the streets are elevated traffic islands. Then there was a long uphill walk way towards the building. *sigh*
First, I wheeled along the steep downwards path towards the first street. It was scary as the handle at the side of the wheel easily give in and I couldn’t keep the wheel sturdy enough from rolling down into the street. When I tackled the traffic island, I realised that it was raised too steep for my wheelchair. It was very hard to keep grip on the handles, and the handles slips away from the wheel and doesn’t help me hold onto a steep walk way. I feared as it seems my chair would just roll backwards onto the street. (It is impossible for you to understand what I am talking about, unless you have steered a wheelchair by yourself…) I need wheelchair for my weakness. I am not one of these Paralympics athletes. This was almost impossible obstacle challenge for me.
It is kind of ironic. As all the disability facilities are only build for wheelchair. (Other forms of disabilities are sort of ignored.) However, the disability facilities cannot be used without a carer helping the wheelchair user. Now, I have to remember this fact and try not to assume I can do things by myself.
I was very lucky. A kind couple was walking towards the same direction. And the gentleman ended up pushing me all the way to the building, to the lift and to the reception area. Without his kindness, I didn’t make it to the entrance. The signage in and outside of the hospital was poorly organised. I got confused in the middle of corridor and had to wheel back and force to find the “Out Patient Neurology Department”. There was no space for a wheelchair to park in the narrow waiting area. I could park under the wall mounted TV and be stared at by many people waiting in the narrow waiting area, or sneakily occupy at the end of appointment desk’s queuing area.
I was called by a young energetic female Neurologist. When she saw me in the wheelchair, she came out and pushed me into the consultation room. She seemed friendly and was kind enough.
She couldn’t find my GP’s referral. So I explained the referral was made back in September and he suggested having MRI. She asked me what my story was. This is a tough part. I don’t think it is possible to explain my condition within 10 minutes. I brought my test results and summary of medication and symptoms with me just in case. And I started with “I am placed under ME/CFS umbrella and my GP is doing his best to find out what’s wrong with me…”
Then, she asked “What’s ME/CFS?” That moment, two words crossed my head. “Uh, Oh…” It was an indication that this consultation would not go well. She is Neurologist and she doesn’t know “ME/CFS”. All my hope was crushed into pieces at that moment. Never mind. Remember the reason why I need to see her. It is to have MRI, not to have ME/CFS treated.
She asked me questions very fast, and sometimes three questions at a time. Since my brain works only slow and cannot process more than one information at a time, it created panic inside of me. She also asked my previous occupation. As soon as she heard “accountant’, she quickly reached to the conclusion “stress”.
I showed her the summary of my symptoms. She said that was a great preparation and was very important, but she hardly read what’s in there.
She quickly checked my CT Scan, which shows a few tiny white spots in left side of my brain, but it really doesn’t mean anything. She asked if I was claustrophobic. I said I didn’t think so.
She then started physical assessments. She was making me look at her fast moving fingers, made me touch her fingers and my nose, made me raise my hands in the air, made me close my eyes and touch my nose, made me walk in toe to heel, made me stand on toes and then heels. The speed she was at, I was getting really confused and couldn’t respond quick enough to her command. I was really panicked. When she was making me walk and stand in funny positions, I felt I was about losing balance and fall. Although she said she was going to catch me, it wasn’t really convincing as I am taller than her.
Then, I lied on the exam table and she poked me, knocked my joints and run her nail in my foot, and etc… She asked me to push my legs up or down, but I had completely lost my ability to respond to her command properly… She kept telling me quickly “No. No. Push down/up.” And apparently, I wasn’t doing the right thing… More panick.
She then looked into my eyes with her little flash light. My eyes may have been moving rapidly again. She asked if I had my eyes checked by optometrist. Everybody asked me this question, so I really make my efforts to see them soon. She dimed her flash light and checked back of my eyes.
After the examination, she quickly explained to me. “Your neurological functions are okay.” Although, it was hard to believe, that was a good news. I don’t know what condition/illness I have now. I do not have neurological problem, so this cannot be ME/CFS… But, she has no knowledge of ME/CFS. So it is not entirely convincing… So may be, I am just sitting under ME/CFS umbrella term, but without definite diagnosis.
Anyway, she went on… “I don’t think you have MS or brain tumour, but I will give you MRI and EEG just to be sure. And I needed to do some blood tests as well.” This was another good news, as the main purpose for the appointment was to have MRI. I explained to her that I already had EEG. So I assume she will obtain the test result from the PA Hospital. She obviously didn’t look at copy of my blood tests, but I missed opportunity to mention it.
Then, she kept going… “I’m not saying this for sure until I see those test results, but I don’t think you have MS or brain tumour. You have too many symptoms and it is not possible for one condition to have that many symptoms. The only possibility I can think of is stress. So once those tests are done and you are cleared from MS, I will suggest to see a psychiatrist. I’ve seen many people like your condition got better from it.”
My condition? I tried to explain to her that my condition is not psychiatric, and my GP are looking at different areas for all the possibilities of my symptoms. There are possibilities in heart and oxygen saturation problems… But she had changed her attitude to the way she would not be interested in hearing what I needed to tell her. I knew when people have that attitude, nothing can change their opinion. And until she has the test results, it is not useful arguing with her. The best I could do is to say nothing to preserve my energy.
I kept telling myself that the main purpose of the appointment was to have MRI. Other things are not important. My wonderful GP has much better idea about my condition than her. So, I really shouldn’t worry about what she said. She has no idea what my condition and severity are. She has no idea if I am living with stress or not. She doesn’t know my mind. And she doesn’t have enough information to recommend me to psychotherapy anyway. I felt it was very unprofessional for her to suggest such treatment. When she doesn’t know anything, she shouldn’t recommend anything at all. Every medical professional uses psychiatrist as an easy escape from their responsibilities.
However, the idea of going back to psychiatrists started to haunt me. With my wonderful GP’s help, I felt I was getting somewhere. If they send me back to psychiatrist, all improvements will be ruined and I have to run the endless circle of psychology torture again.
Because I behaved and did not argue with her, the Neurologist kept cheerful attitude and showed the confidence that she impressed me enough. She had no idea that I actually got disappointed by her lack of knowledge in her speciality area. She called a nurse and asked her to take care of me.
As the nurse was pushing my wheelchair, the Neurologist even cheekily advised me, “Do some exercise!” This time, I couldn’t stop myself looking at her with disgust, and told her that I cannot exercise. If she had looked into the list of my symptoms, she would know what happen to me if I try to walk a few meters. Even the nurse showed her shock in her face by this advice. I know. I’m not using wheelchair for fun…
Despite the neurologist asked her to take care of me, the nurse had no idea what to do. I was given two pieces of papers, but didn’t know what I was supposed to do with them. She went back to ask the neurologist. She showed up at the door and told me with friendly smile that everything will be advised by mail. The nurse took one of the notes to admin. The other was for me to take to the pathology.
She asked if there was someone with me. I said “No.” Then, she asked me who was living with me. I said, “Nobody, I live alone.” Then she showed shock in her face again and looked at my face. I knew she was thinking I was too ill to be alone. But there is nothing I can do about this situation, so I couldn’t say anything back to her.
“What are you going to do now? I’m not allowed to leave this premises.” She was worried. So I said, “I will be okay. I just go slowly and eventually I will get there.” So she did her best and wheeled me to outside of Out Patient Department.
On the way to the Pathology Department, a lady with a toddler in her arms offered me to push. It was very nice, but I knew she could not push me while holding her son in her arms. So I thanked her for her kind offer. After a while, another gentleman offered me his help and pushed me all the way to the Pathology reception.
On the way back to my car, another kind lady offered me to push when I was stuck in the middle of upwards path at traffic island. I am definitely going to ask for ambulance transport next time.
When I started packing the wheelchair, the Neurologist’s suggestion of Psychiatrist started to bother me. It may be something to do with my slow information process, my emotion develops slowly. At the consultation room, I was very upset with the suggestion. At this point, it was developing into anger.
It was my luck that I had my regular GP’s appointment later on the day. By the time, I entre his consultation room, that anger was developing towards rage.
While he was checking my blood pressure, he asked how the Neurologist’s appointment was. When I tried to explain her suggestion of psychiatrist, I was in the state of being infuriated. I was also very fearful of going to back the treatments that actually made my condition to severe disability.
Dr TL was amused and showed me the blood pressure record. It was very high. So I tried calm myself down and we tried another one. It was still high. We tried the third time, and it was rather normal.
He was serious and asked if the Neurologist actually said I needed to see a psychiatrist. Well, she didn’t say in definite way, but she had already made up her mind. Then I couldn’t hold myself and kept expressing my anger, “I know my mind! I’ve been there and done that! They don’t work for me! She doesn’t know how I live. She doesn’t know my mind. It was very irresponsible of her to suggest such thing without knowing what it is!!!”
He calmly explained his opinion on hospital people’s attitude and psychiatrists. Then he told me that I am not crazy, I am not depressed, and I have good attitude, therefore I DON’T need psychiatrist. It was the magic words I needed to hear. He is still not going to sell me to psychiatrist. He will not going to send me to the treatment that would harm my health.
I also expressed the left over frustration from her “Do some exercise.” Dr TL quickly asked me what would be my favourite exercise. Well, jogging, long walk, swimming… Then, I felt in my mind, “Oh, they are boring sports, aren’t they?” He cheekily said, “I think you like sky diving.” Ha, ha, ha. I’m not extreme sport kind of person. I’m not after adrenaline rush. The most extreme I ever got was Scuba Diving. But I rather float than sink… He laughed and said floating is good, too. He knows how to calm me down.
He has enough knowledge about what is going on with me. There are still mysteries, but it is not his fault. We don’t need to go over and over to remind what I can do and what I cannot. He knows I will be in trouble if I keep standing for 10 minutes and I cannot walk more than a few meters. So he will never recommend exercise even it is supposed to be good for everybody’s health.
From the Neurologist appointment, all we needed was MRI. And he will continue taking care of me and do his best to find treatment for me. He actually mentioned that there may be some possibility that treatment for my condition will be available in 5 years time. Is 5 years too long? Well, if we compare it with forever, it is near future.
As soon as I heard the word “you don’t need a psychiatrist.”, I felt relaxed and all exhaustion from appointments and long day set in. I was talking with him, but not really interacting with him properly.
I talked him about the pain that is coming back. It is still under 5/10 and I can live with it without treatment. But I feel it might give him some clue and he is always willing to listen to me even it is just a minor thing and no need for immediate treatment.
The pain I mentioned was dull pain (and occasional sharp stubbing one in lower back) along spine, surrounding muscle and internal organs. He suggested that the cold weather might be doing something about it. When the temperature goes down, blood flow in the body slows down, then organs cannot metabolise fat properly. These all contribute to pain. Problems with blood flow make sense. As usual, I enjoy little education by him.
But he believes that the joint pain I experience after exertion is rather relating to my condition (ME/CFS).
This conversation used up all my cognitive ability left at that moment. I was feeling very tired and my eyes were getting soar. And I noticed he was tired, and his eyes are getting soar, too. He had a very long demanding day. He still coughs. According to him, he is fine now and the cough can last three months.
At the next appointment, I hope my brain is bit sharper and could ask him about the possible treatment he mentioned. I am just very lucky to have such knowledgeable and understanding doctor.