Matthew’s brief story explains how even after a long period of symptoms, getting the right diagnosis and explanation can lead to improvement that is sometimes baffling for both patient and physician
My name is Matthew, and I am a 53 year old male living in the US. For almost 10 years, I was afflicted with seizure like symptoms that felt like a strong electrical shock. Over time they progressed to the point where it happened several hundred times per day, and I was nearly unable to sleep. I saw 9 qualified neurologists in my area and had more MRIs, EEG’s, sleep studies and blood tests than I can count. None of them had any idea what was wrong.
In July of this year, I saw a new neurologist. After taking a very long history and reviewing a large pile of records, the said, “I think I know what you have, and I think we can fix it.” I was totally unprepared for that. She proceeded to tell me that I had a functional neurological disorder, which was my tests all came back as normal. She scheduled additional tests to confirm the diagnosis over the following week.
The night of her diagnosis was the single worst night I have ever had. My symptoms were so bad that I went the emergency room because I was afraid I would have a stroke or heart
attack. Starting the next day, my symptoms began to recede, and by the time I had my final consult with the doctor 8 days later, they were completely gone. It is now three weeks since that consult, and although my symptoms are not completely gone, they are at least 98% better, and the sense of foreboding that plagued me for years is completely gone.
I am writing to you because of your article, “Functional neurological disorder: The neurological assessment as treatment.” I thought that you might find it interesting that in my case at least, the neurological assessment appears to have been a complete cure. I did not see any reference to that in your article.
I would hasten to add that I believe that my new doctor did a nearly perfect job of presenting this to me. By the time she shared her diagnosis, we had spoken for over an hour, and she had earned my complete trusty and confidence. Her words that “I think I know you have, and I think we can fix it” perfectly put both of your elements out there, at least for me.
I also want to that you for writing that article. It was very helpful to me as a patient, and it filled in a lot of gaps. I still have not found much in the way of an explanation as to why the assessment has therapeutic benefits. I can only surmise that the brain is capable of digesting the information and adjusting on some unconscious level. Whatever happened to me was most certainly not an act of will.
As a person with FND, I have appreciated the many articles you authored on the subject. Thank you.
Reply from Dr Stone:
Many thanks for your interesting and gratifying email
Im really glad that you found a good physician to help you with this and that some of my material has been of help
I do have patients who recover completely after finding out what is wrong and changing their views about it. I suppose I didnt want to seem arrogant in writing about it, or raise expectations too much as most patients need a lot more time
You raise a really important question about how that works. I often quiz my patients who improve to try to work out what has happened. Very often they are as baffled as me but some do recognise that they have undergone a fundamental shift in how they viewed the symptoms and where they were coming from. They have then responded differently to them as a result. In a sense that is cognitive behavioural therapy right there. Once beliefs have changed I think its hard for people to go back and put themselves back. eg Can you remember a time when you didnt know that 10+15=25? At a neuroscience level changing fundamental predictions that the brain makes about movement alters attention and changes nervous system functioning at a cellular level that is consistent with these changes. The process is as much neural as cognitive in my view.
This is a great TED Talk by Anil Seth, a neuroscientist working in the field of consciousness about how the brain predicts the world and helps to see how that process can go wrong
So thanks for sharing – and I hope things remain good – 3 weeks isnt long and relapse is common – but it sounds like you are well on your way at this point
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