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Everything in the photo below is considered an "incidental finding" and there's still no answer for what's causing my symptoms. The movement disorder specialist says the lesion is in one focal area and therefore wouldn't cause the symptoms that I'm having. She went on to say that she thinks it's incidental but offered to refer me for a second opinion. I have a follow-up appointment with the neuro-ophthalmologist on the 21st. If there are more changes to my visual field or more retinal nerve fiber layer thinning... I'm sure that will be considered incidental, too.
I added the headings to the photos to show what I've been diagnosed with. The doctors say that all are incidental. I was very discouraged by the most recent one (the white matter lesion) because it hasn't been determined yet what it is. After my MRI, a nurse called me saying that the doctor had viewed the MRI herself. She went on to say that the lesion "doesn't have the characteristics of an MS lesion" and that it's a "tangle of blood vessels" (an arteriovenous malformation). She said angiography could be done to investigate further. I waited for a call back for one week and then left a message for someone to call me. Nobody called... but I suddenly received a message on the patient portal from the doctor. She said " The reason to obtain vascular imaging would be to see if there is anything like a small vascular malformation underlying the single white matter lesion seen on the scan." That isn't what the nurse told me! I was given the impression that the doctor actually saw the AVM but that's obviously not the case. She added that the lesion is incidental because it's in one focal area and couldn't be the cause of my neurological symptoms. She ended her message with "I would be happy to refer you for a second opinion and review of your scans at another center." I asked for a referral to a neurologist nearby who will hopefully investigate the white matter lesion and my other "incidental findings". I can't figure out why the lesion couldn't be an MS lesion. This is the same doctor who suggested that I have a "functional neurological syndrome" due to "past trauma" because my symptoms don't fit perfectly into an easy diagnosis.
It probably isn't a great idea to self diagnose from these images. If you have prior diagnoses I would be digging deeper into what can be done about them.
That's where it feels like you might get some benefit.
I'd get a second opinion. The diagnosis of each section might be correct but so far you have not been given a strategy that focuses on them. Someone else may.
No problem, Scott. I'm hoping to get the referral soon and hopefully the next doctor will look more closely at these "incidental findings" instead of dismissing them. I know something is causing my symptoms and I'd just like to have answers. I'm having so much trouble walking now and it's really having a negative impact on my daily life. I get dizzy and weak often - usually late in the evening when I'm fatigued. It hit so bad the other night that I actually slid out of my chair into the floor and my husband had to help me up. There has to be a reason for these symptoms.
I had my follow-up appointment with the neuro-ophthalmologist on the 21st. The visual field test shows that the defects are worse in both eyes and the optical coherence tomography scan shows retinal nerve fiber layer thinning in both eyes. It isn't severe right now (thank God) but the doctor wants to repeat both tests regularly.
