Jul 29, 2009
So, the quest for information continues. I saw a neurosurgeon who specializes in the spine in February to talk about the headaches and numbness/tingling. My doctor really sent me there as a way to get a second opinion on the brain MRI. He said I should have had the MRI at 6 months - it's protocol, so I had a second one in March, which showed everything stable. It was an open MRI, though, so some of the pictures were not as well defined. Good news. I asked if my headaches could be caused from the cyst, and he answered that if we removed the cyst, my brain would shift and bleed and I'd have all kinds of neurological problems and I'd still have headaches. Not the question I asked, but apparently what he needed to say. He also put me on Elavil for the neuropathy.
I had a vasovagal (presyncope - meaning I almost fainted) response to an abdominal cramp in May, on my drive to work, which necessitated my first (and hopefully only) ride in an ambulance. The vagus nerve is a cranial nerve that constricts blood vessels in the event of trauma, so you'll know you've had a vasovagal response when you start getting tunnel vision and your ears ring so loudly that's all you can hear. Instead of fainting (while I was driving, thank goodness), I hyperventilated to get O2 back to my brain, which made the EMTs and the ED nurse think I was having a panic attack. The ED doc and my own PCP disagreed with that, my PCP saying that I just have nerves that are very sensitive.
I have something with my health plan where a nurse with the insurance company will help you manage your care. We email or talk on the phone, and she has been very helpful in helping me navigate the doctors or just letting me vent and figure out what to do next. So, when I called the neurosurgeon's office with a question about the Elavil and was told that I should take it up with my PCP, and I was very upset that I didn't know this, she helped me set up an appointment with my PCP to help me get a plan in place, and understand how the chain of command works. (She also told me that Neuro specialists are odd people.) I consider myself a very independent person, but these past years have been more than I could figure out myself, so she is very helpful. Check to see if your plan has this feature - it's fabulous!
I made the appointment, and my PCP sat down with me and answered every question I had about how to arrange for the annual MRIs I'll need, and listened to my concerns about the neuropathies. She sent me to see a physiatrist who diagnosed my thigh numbness as meralgia paresthetica of unknown origin, and sacroiliitis (inflammation of the tailbone), which directly contradicts my earlier diagnoses of lumbar spine problems. Although I have some bulging, apparently the MRI does not show any nerves being impinged. PT for the tailbone, and Elavil for the thigh. But, he was concerned that my reflexes were brisk to hyperreflexive. Apparently when they hit your ankle with a mallet, your neck isn't supposed to jump. :-) So, he sent me to another neurologist, who specializes in MS. This neurologist also found my reflexes to be brisk to hyperreflexive, but said it's "just you". It wasn't me in January, but, what do I know? I've been researching things that cause upper motor neuron problems like hyperreflexia, but don't see anything that fits 100%.
He agrees that the cyst and cavernoma are non-symptomatic, that my lesions are a sign of aging (not near the ventricles), and suggested that I cut my Elavil dose in half to see if it will help with my overwhelming fatigue. It has allowed me to stay awake (I was falling asleep every two hours when I laid down to do my PT) through the day, but I still have such awful fatigue in my arms and legs. I feel more of the pain in my thigh, but it seems like a reasonable trade-off. My dizziness has increased this month with the heat. Anyway, that was about 10 days ago. He added as I was going out the door that I don't have MS. (I didn't ask.) He also said that he would expect that the symptoms of a B12 deficiency would resolve about 6 months after treatment begins, but he wouldn't say it couldn't be longer. Safe thing to say since I'm about 9 months out.
I'm relieved that I don't have one name to put on everything that is going on with me right now, but I really do wonder how much of this is residual effect from the B12. At least I'll have annual brain scans - so I'll know if things change in that regard. The good news is that my PCP seems to be on my side, I have met with a neurologist who was respectful and checked things out thoroughly, and that I know the plan for my care. The rest will just have to be part of the wait and see thing.