We’ve got nothing.

So the arm EMG/Nerve conduction test came back normal. Actually she was amazed I don’t have an evidence of carpal tunnel, given that I’ve been a student for so long. I do have a tiny bit of nerve slowing in the one nerve that goes around my left elbow, but that’s apparently very common and even if it wasn’t – it still wouldn’t account for my symptoms.

So we have nothing. Dr C rolled away from the EMG machine, and told me frankly “I have nothing to diagnose you with.” She said we could try to manage my symptoms, but she got the impression that I would rather know what was going on and work to treat that rather than just manage symptoms. Which I totally agree.

I still have my neuropsychologist appointment on Friday. Dr. C said unless some new symptoms start, or the appointment reveals I should have some cognitive therapy, then I won’t need to see her anymore.

If the neuropsych appointment doesn’t show anything, I don’t know what I’m going to do. I HAVE been having issues and difficulties. At least I feel they have been difficulties, and I haven’t been getting what I need or even want to get done done.

I can’t imagine all of this is in my mind. And I really don’t think I’m just being lazy or avoiding doing work, But nothing is showing up. What if nothing shows up on this? How do I keep from doubting myself, let alone convince others to keep looking for what is going on?

This is really putting the “invisible” in invisible illness.
And as much as I’m happy to NOT have something horrible show up/ to be able to rule out things with clear tests, it is so terrible not having any indication of what is going on.

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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…