Neuro, Neuro, whoa baby, we don’t know…

A MRI told me just the other day
That my brain looks quite okay.
We don’t know what it could be –
That’s causing all these symptoms in me! (To the tune of Pharaoh, Pharaoh.)

I haven’t really talked much about what’s been going on lately. I’ve been working with a neurologist to try to determine if a range of symptoms I have are neurological – and if so, what is causing them. These symptoms include migraines; vision flashes, black spots, and random onset blurring; tingling and numbness in my extremities; occasional numbness in the right half of my face; occasional burning in the other half of my face – like a really bad sunburn;  some cognitive difficulties; occasional weakness; occasional involuntary muscle spams; and a few other things that I’m sure I’m forgetting right now – its getting hard to keep track.

So far we’ve done a ton of blood work, a spinal tap, two MRIs (brain and cervical  – both with and without contrast), an EMG and nerve conduction study on my legs, and thorough ophthalmologic exam.

What we’ve turned up is basically nothing. The Lyme Western Blot from my blood work came back positive- but only for a short term infection, not long enough to account for my symptoms. We think it’s a false positive, but I started a round of doxycycline hyclate to treat it just in case. The doxy makes me super nauseous, which is fun.

The spinal tap panel for MS came back absolutely unremarkable, as did the brain MRI. The cervical MRI report showed some degenerative disease, but it doesn’t account for my symptoms either. The leg EMG and nerve conduction test showed no degeneration in my medium or large nerves, and normal muscle reactions. Small nerve damage can’t be determined by the EMG though, so we don’t know about that one. Only a skin biopsy can show that, and we aren’t sure if that would be useful at this point.
The ophthalmologic exam concluded that it is highly unlikely that I ever had a vitreous detachment – which we suspected caused my migraines, ocular flashes, and floaters 4 years ago – and that since my eyes look perfect, it is likely that these symptoms have been neurological all the time. The ophthalmologist did mention that I may have a hemorrhage 4 years ago that caused the sudden 100s of floaters (thankfully I still only see 1 now), but there was no way to tell now.

I have and EMG and nerve conduction test for my arms on Tuesday, and see a neuropsychologist to assess my mental functioning on Friday.
If those don’t turn up anything, I don’t know where we’ll go from there. Dr. C, my neurologist, has mentioned sending me on to a rheumatologist or to tertiary care at UVA, Wake Forest, or Duke, if we can’t figure out what’s going on.

In the mean time, I also have to find a new PCP associated with the student health center, as Dr. B2 – who I loved so much -has left to have her own practice. Without saying anything to me. I was actually quite devastated when I tried to contact her and she was no longer in the system.

I hate when doctors leave me. Especially when they’re one of he few who has actually been helping me, listening to me, and treating me like I am actually a competent person who is informed about my health.
I guess that comes with this chronic illness territory…

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