This past Friday, I had a follow-up with Dr. F, my neuro-ophthalmologist. She’s so so sweet! The external ophthalmoplegia (weakness/paralysis of the eye muscles) in my left eye is stable at the moment which is great news! 🙂 For those who don’t know, my left eyeball can’t look to the left very well at all which isn’t much fun…but there’s not a lot that can be done for treatment, so she just wants to keep monitoring it.
I still get nystagmus (fast, uncontrollable movements of the eyes) every now and then, but thankfully, I can keep it at bay as long as the migraines aren’t too bad and I get adequate sleep. 🙂
For 3 weeks now, I’ve been having horrible spine pain, and I have no clue what started it. So my physical medicine dr. squeezed me in today. So grateful! He ordered two x-rays of my thoracolumbar spine, and the images show that I have some multilevel degenerative disk disease. One problem after another…I sure feel older than 21……..lol. 😉 The spine pain may also be from the underlying mitochondrial and/or neuromuscular disorder. So Dr. C ordered more physical therapy, and I have a follow-up with him in 3 and a 1/2 weeks. If things are no better by that point, then he’ll possibly order more imaging studies like an MRI.
This coming Wednesday is my spinal tap at 8 AM! I’d appreciate your prayers! My pain dr. told me I’m at increased risk for a post-dural puncture headache, so we’ll see how bad it is the second time around.. Thank you all for your continued love and support! 🙂