My Appointment With The Neuro
Last updated: January 2023
This was my first in-person appointment in Glasgow with my neurologist after going off steroids and starting Rituximab. He's an MS specialist - not an NMOSD specialist. My hospital has no NMOSD team since the disease is extremely rare.
Getting ready for my neurologist appointment
The day started quite early. I got up, got ready, and packed my bag for university since I had class after my appointment. My dad drove me to the hospital. I waited in the neurology block waiting room for around 20 minutes until I was called up to see my neurologist.
Wait, we can't talk about my blood tests?
The NMOSD team I saw in Edinburgh did antibody blood tests again just to see if I was still AQP4 positive. That was the main thing I was looking forward to talking about.
However, upon asking him about them at the hospital I was currently at in Glasgow, he said he couldn't access the system. He couldn't tell me. But, he also said the results wouldn’t matter because I’ve been on treatment for a long time, and the results may be negative and unreliable.
A laundry list of issues
I had a few issues I needed to speak about with him. One of them is the muscle pain in my left leg that doesn’t seem to go. I've been dealing with bladder issues, frequent UTIs, kidney infections, and trouble emptying my bladder properly. My lungs are also having a hard time recovering since catching Covid in July.
My bladder issues
Because of my brain fog and another doctor in the room, I forgot to talk about many things on the list, including the lung issue. However, I spoke to him about my bladder issues, and he said that with Rituximab, it’s easier to catch infections like UTIs and that they can’t do anything to prevent that. He taught me how to double void if I feel like my bladder isn’t emptying. He also said he’d send me an appointment for a bladder scan; if things didn’t work out, we would have to consider using a catheter to help empty my bladder.
A mental health check-in
He then went on to ask about what I’d been up to, how university was, and how I was generally feeling. He asked how I felt mentally as he remembered how I was in a dark place the last time he spoke to me. I found that sweet. Many doctors care about the physical aspects but neglect how the person feels emotionally. I told him I was feeling much better than before, but I still have symptoms like muscle and nerve pain, neuropathic itch, and tremors. He said we would not be able to get rid of many symptoms as the damage had already occurred. I already knew.
He went through the medications I was on. For my muscle pain, he said I should increase my amitriptyline dosage. I tapered down to 10mg from 30mg in July as I kept having kidney issues, which could have been the culprit. But now I’m going up to 20mg from 10mg to see if it helps with the pain. Slowly, I may build up to 50mg - but I’m a bit reluctant as changing the dose may affect my mood. I can’t have mood swings whilst I’m studying because I know I will fall behind in coursework.
We spoke about how Rituximab was working for me. Initially, I was so glad my neurologist listened to my concerns and put me on this treatment. I still am, and I told him it’s working great right now. Even with the side effects I’m experiencing, a bit of hair loss and frequent infections, I would rather have that than a relapse. I forgot to mention the hair loss to him too.
He said for now, and we will continue with the Rituximab. However, in five years, we will think about a potential change. We may keep it at the exact same dosage and have it every six months or lower it and have it every eight months or every year. It depends on the circumstances, and if things look good, we could even completely stop Rituximab and test for antibodies again and see if I need further treatment. He also mentioned that as I was once AQP4 positive, he’s quite reluctant to stop treatment, which I agree with. I do not want a relapse. I worked really hard to get where I am now.
I have had bone pain since taking steroids, and I mentioned that to him, but he brushed it off and said steroids don’t cause bone pain. I don’t know what to say to that as the first neurologist I met with, the day I got diagnosed, who also created my treatment plan, told me that steroids would thin my bones and I would need to take Vitamin D and Calcium.
However, it’s not my place to argue with a neurologist who knows better than me, so I will start taking Vitamin D and other things that could help strengthen my bones.
I'm happy with how the appointment went
Overall, it was a good appointment and I really like my neurologist. He’s kind, and he listens. I was lucky enough to have access to a neurologist who actually cares about what the patient thinks.
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