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…

Spinal Tappppppp

I finally got the orders from Dr. C, for all that testing she wants done. I picked them up on Friday, promptly went over to the student Health Center for my administrative referrals, and then called where I could to schedule the appointments.

The neuropsychologist office is the only appointment I couldn’t make, as Dr. C’s office has to contact his office (Dr. H),¬† then send him all my file, and wait for his office to contact me to schedule. I expect that one to take some time.But I’ve gotten all the others set up. I’ll see the ophthalmologist, Dr. F, late in October (the 23rd). The MRIs (brain and cervical spine – both with and without contrast) will be on the 13th; I expect to be in the imaging center for a long time that day. And the spinal tap will be on Wednesday. That’s right, September 30th. I really didn’t expect it to be so quick.

On Tuesday, 29th, I have to do a radiology consult, before the actual procedure, and then at have to be at the hospital at 8:00am the next morning.
I’d be freaking out if I had anytime to. But as of right now I have a ton of homework due Monday, an appointment with the reproductive endocrinologist Monday (Dr. E-H; but this appointment may or may not be canceled, as she had a family emergency out of state come up on Friday and her office was unsure if she’d be back in time – if she isn’t then my appointment will be on Friday of the same week.) Class from 1-4pm on Monday, which I may or may not make it to depending on the doctors appointment. The radiology consult on Tuesday. The spinal tap on Wednesday. Maybe a doctors appointment on Friday… and I’m sure a ton of homework I’ll have again for the next week.

Hopefully I won’t get the horrible headache that affects 25% of people after a spinal tap, where you have to lay FLAT on your back for a few days to clear up. It’ll be just my luck that I will though, so I’ve taken off for the week, just in case.

Any last minute tips for preparing for, and recovering from, a spinal tap? This is the one test that has me incredibly nervous and anxious; the thought of a giant needle in my spine is terrifying…


Met with Dr. B this morning. I didn’t give her the list of I keep of what’s been going on since my last doctors appointment; she hardly ever addresses my concerns anyway. I even mentioned I had a neurologist appointment in September, and she didn’t ask why or who was sending me there.

She did conclude that I have depression (which, we’d discussed before), and apparently an anxiety disorder (I’m unconvinced).

We were discussing the efficacy of amitriptilyne in treating my migraines. Which it isn’t anymore. And she wanted to change the drug, rather than the dose. She mentioned the other options were blood pressure medication, or topamax- but topamax can make you foggy. I told her that cognitive issues were currently my biggest complaint and I couldn’t handle being foggy anymore than I already am.

She concluded that I am too anxious to concentrate, because I’m already focusing on the next thing to worry about. …I’m not.

I think my level of anxiety is appropriate for what is going on in my life.

But, I do agree that my depression needs to be treated. It has gotten really bad lately. And while I think the depression is a result of my inability to concentrate or think clearly and get done what I need to, I think the depression feeds my cognitive issues. Hopefully treating it will help.

I’m also out of letrozole and norethindrone on Thursday, so we’ll see if coming out of chemical menopause helps my cognition any.

We did opt not to change my amitriptyline until after I see Dr. C, the neurologist. Since I was only ever given the ocular migraine diagnosis by opthomologists who couldn’t see any other retinal problems, I’m looking forward to getting a neurologist’s opinion.