My Neurologist Appointment and Being an Informed Patient

Last updated: June 2022

I recently discussed how I had augmented to the medication levodopa. It caused a whole lot of chaotic symptoms. I had to wait to discuss a new medication with my neurologist. Recently, I went in for an appointment and, among other things, discussed my restless legs syndrome (RLS).

The importance of a good neurologist

I do not see a neurologist specifically for RLS. However, I am glad that I have a neurologist available for RLS treatment. My neurologist is one of the best I have seen over the years. Actually, he and one other guy I used to see years ago rank as the top 2. It is extremely hard to find an excellent neurologist. Not to mention one that is in any way approachable, intelligent, and knowledgeable.

Learning about RLS for myself

He was the one who told me I had RLS. I wasn't aware RLS could be that intense. It bothers me a bit that no one thought to check my iron and ferritin levels before putting me on medication. If this could be managed with iron supplementation or even just significantly reduced with it, that sure would be great to know.

However, having done my own research, that is now a thing I know. Sometimes we have to figure these things out ourselves. Sites like this one can help us learn about our condition and be informed patients. The more we know, the better we can approach our own treatment.

What does my neurologist know about RLS?

No specialist or doctor can know everything about everything. That is just the way it is. So it came as no surprise to me that when I mentioned my RLS complications, he pulled out a hefty RLS book – one he said he referenced regularly for his RLS patients.

He had a young man there who he was training. Well, I assume an already well-educated young man on his way to becoming a neurologist himself. So he was pointing out some RLS facts and the reference book he used with patients.

This is good because RLS is more complicated than many doctors tend to think. Therefore, we need more careful attention than many doctors care to bother with. I like a specialist who keeps themself informed on a topic.

Neurologists cannot know everything about every condition

But there is the fact that the RLS recommendations have recently been updated as of 2021, which would be more current than his reference material. So his recommendation may be outdated.1

At the time of my appointment, I might have suggested an alternative treatment had I been aware of this. He is a neurologist who wouldn't be offended if I did, as some would be. And this is because there is no way he can be up to date on every single change and study on every single neurological condition. It's impossible.

Although, he's very current on migraine disease and multiple sclerosis and likely a few other conditions he specializes in. I see him for migraine disease as well as a vestibular condition.

Why I am an informed patient

I'm an informed patient. In the past, with neurologists, I have recommended a particular medication I want to be on based on specific research I have done. Given, in that specific case with migraine disease, they have long ago run out of ideas for me, they do tend to take those suggestions.

Not that I'm against my neurologist's current recommendation. Only that I also want to try iron supplementation with a doctor's supervision.

My neurologist changed my RLS medication

He switched me from levodopa to the dopaminergic agent, Mirapex, after asking me if I had any gambling side effects on levodopa or any hallucinations. Although rare side effects, he just wanted to make sure. I don't even gamble. Ever. Other than migraine auras, also no hallucinations. He said Mirapex is quite commonly recommended for RLS these days.

How it is going on Mirapex

I have been on the new medication for a week or so, and it works just as well as the levodopa. So no more extremely aggravating symptoms during the day, early evening, and middle of the night. I have even had some decent nights' sleep in there.

I still plan on asking my doctor to test my total iron count and see if we can try iron supplementation to either replace medication entirely or reduce the need for it. It is worth a go.

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