I've honestly had difficulty marrying your symptoms with your diagnosis's (dx) with your mentioned abnormal clinical signs with your MRI evidence.
The first neuro dx-ed you with "trigeminal neuralgia" but TN is is a chronic pain disorder that affects the trigeminal nerve, TN is typically described as the worst pain ever experienced, more painful than natural childbirth, TN is also known as the suicide disease. TN affects areas of the face eg lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. The painful electric shocks zapping repeatedly during episodes which are commonly triggered by things like a light touch to the face, brushing teeth, eating, talking, yawning and smiling, shaving, even a light breeze can trigger an attack.
What you've described experiencing... "left side of my face went numb. It felt like a buzzing battery inside, but I couldn't feel my face when I touched it" which shortly there after spread "spread down my neck to the left side of my chest" ....doesn't actually fit a dx of TN
because it is quite different to the known trigeminal nerve pattern, ie cranial nerve iv course and distribution...
see to explain; https://www.youtube.com/watch?v=rr6RaM4NjhQ
[note there are likely better examples but it'll give you an idea of where TN effects and why i'm saying TN doesn't match the symptom pattern]
You also stated "Recently, the numbness has gone to my flank and my thigh--all left side. All of this comes and goes, the longest stretch was 28 days." .....i'm not sure if your meaning that the numbness has now spread to not only the left side of your face to your chest, but it additionally runs down from your flank down to your thigh, so it's now all the way down your left side from your face to you thigh. OR that your meaning the numbness has moved to your flank and thigh. [i am assuming this additional "numbness" still means as you described the numbness on your face to chest ie couldn't feel when touched]
The pattern actually makes me have some understanding of why the second neuro and first to consider a neurological causation like MS, might of been thinking it wasn't MS when your C-spine MRI didn't show any spinal cord lesions, that type of symptom pattern would usually be suggestive-consistent of spinal cord lesions in MS. Having no spinal cord lesions brings in alternative spinal related differential eg structural spinal issue ie stenosis, degenerative disc etc although structural would be the peripheral nervous system and not the central.
Actually some of the other things you've mentioned would also fit in with a spinal causation too but and since your spinal MRI;s were fine and your peripheral nerve tests were also fine the diagnostic evidence would be pointing away. I understand your concern with your brain MRI results but the location of the t2 and t1 lesions from my understanding wouldn't cause the types of symptoms and pattern you've been experiencing, so it is possibly unrelated....
I actually think it might be beneficial to go back to your GP and ask the question....'the last neurologist i saw mentioned it was "CNS inflammation" what does that mean and if it isn't a neurological causation, what else could it be and what tests haven't i had yet to rule out or in the alternative explanations and work out what is causing this?' please don't be surprised if one of the alternatives is mental health, i'm not saying it is but mental health is a 'possible' alternative just like the other medical alternatives and when mental health is mentioned, it is usually in your best interest to get your mental health assessed and have M/H ruled out, it also never hurts to have the additional support and proof it's not M/H related.
I hope that helps a little......JJ
Hi and welcome,
To be honest it's actually a very hard question for me to provide you with a definitive answer.....from my perspective after reading your post, your basically saying that even though you've seen 3 different neurologists investigating the potential of IF you could have a neurological condition like MS or it's mimics (the first assessment 6-8 years ago with the latest 2 assessments being more recent) and despite the abnormal neurological clinical signs and or test evidence you've mentioned, these 3 neurologist have come to the same/similar opinion that your neurologically related results are not suggestive-consistent with a neurological condition like MS or its mimics...
One of the questions i have is why would these neurologists dismiss seemingly abnormal neurologically related objective diagnostic evidence and all i can come up with is that from their individual prospective your diagnostic evidence didn't present with objective diagnostic evidence of abnormality ie your clinical signs were normal, your diagnostic evidence in it's entirety is not consistent with a neurological disease-condition-event, the diagnostic test evidence didn't corroborate your symptoms etc etc.
Most research studies have shown that there is correlation between black holes and atrophy although it's spinal cord atrophy that consistently shows a significant correlation with disability, with the brain the significance usually correlates with location, size, high hyperintense and hypointense lesion load etc.
I'm sorry but i'm actually confused by the term of "callosal marginal fibers" because my pea brain is stuck on the 'callosal marginal artery' but it's very late over my side of the world so i'll continue this tomorrow when my pea brain is back on line.
To be continued....JJ