Opinions on MS Workup, Please

[Boudica95]

Hi. Back in 2011 or 2012, the 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. It really freaked me out. Ended up getting my arteries/veins tested in my neck--all clear. A bit later, it wasn't just my face, but spread down my neck to the left side of my chest. So, I was referred to a neurologist. At that appointment, I learned I couldn't heel-toe walk anymore and she asked if I was drunk and said I had trigeminal neuralgia.

My left arm and leg also feel weaker. I'm guessing this is subjective since I had an EMG/NCV and was told it was normal. I also get horrible crushing around my chest and back, like I'm being squeezed to death. I can't stand with my feet together and eyes closed. And if I walk in the dark, I sway and stumble.

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 also get extremely off balance like I'm drunk and dizziness. So, I got another referral to a neurologist who told me he would order an MRI but there would be nothing wrong. But, there was something wrong--multiple T2 hyperintensities; 5 lesions in the callosal marginal fibers; 2 in the U-fibers. The impression said because my age and the pattern of lesions, demyelinating lesions from multiple sclerosis should be considered.

So, he ordered another MRI of my C-spine which showed no lesions. I was told because it was clear, he didn't think it was MS and offered no advice or explanations. Naturally, I was upset and my PCP sent me to another neurologist. That one ordered MRIs of my brain, C-spine and T-spine; so many blood tests, EMG/NCV and a lumbar puncture.

All the blood tests were normal including vitamin deficiencies. C-spine and T-spine normal. Brain MRI said slight atrophy and black holes with no new lesions. EMG/NCV was normal. Lumbar puncture was normal for everything except 2 CSF-specific O-bands/none in serum. When it was all said and done, this neuro said I was stressed and to talk to a counsellor.

In the meantime, I am tired all the time. For a week or more sometimes it is like every single thing requires so much energy that it's not worth it.

I guess I'm wondering if you all think this was a good workup for MS? The last neuro had only been practicing for 4 years or so...so wondering maybe he doesn't have the experience factor. I don't know. I'm just so tired of feeling like this, dragging my leg when I'm tired, being tired, and yet hating doctors with a passion now. Do you think I should try yet another doctor, or just accept what is?

Thanks for any responses!

[supermum_ms]

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
  
  

[Boudica95]

Just wanted to say M/H and conversion disorder were ruled out.

[supermum_ms]

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

[Boudica95]

Thank you so much for replying.

To clarify, the first neurologist only saw me for my face numbness/tingling as that was the only problem I was having at the time. She said it was trigeminal neuralgia but gave to treatment and no tests. The second one said if I had lesions in my C-spine then MS. The third, said CNS inflammation and stress.  I did ask him what's causing the inflammation and what I can do, but again no recommendations other than counselling.  

I am 39 now. From what I read atrophy and black holes aren't that common in otherwise healthy people in my age range. So, I'm concerned about that naturally.

As for callosal marginal fibers, I have no idea. Honestly, the only thing I understood from the report was the impression lol.

I'm much relieved that someone feels this was a thorough workup. Now, just to try to find answers as to what is causing my problems. I would love to figure it out and feel "normal" again.

Thanks again!