OK...went to neuro 2 (refresher: the one who thought I had CD--but only for the top half of my body) today. He re-did his entire exam. I'm hyper as all get out in lower extremities--both feet flopped all over the place with the reflex testing. Don't remember about upper. Notable weakness in both lower extremities and in left upper (didn't know that). My spine is curved (not in a normal way)? Didn't know that, either. He had me walk, etc.
Then he said that one thing on his mind is primary lateral sclerosis. This was before we reviewed my MRI/CT history. He was treating the entire appt like it was new, as though we hadn't had one a year ago (he was doing that on purpose, trying not to bias his current impressions; then he went back and compared data). Anyway, that was on his mind, although I think with the paresthesias and Lhermittes, that doesn't make a ton of sense? It's a motor neuron disease, so paresthesias would be sort of unusual--although I have to admit that many other aspects of it are a perfect fit. I'd never really heard of it before.
He was again unimpressed with my beautiful brain. Said it didn't look like MS. Then wandered around my spinal cord for awhile. At first, he really hung around on those tspine herniations, but seemed to accept that the two neurosurgeons were unimpressed AND that the arachnoid cyst had gotten smaller. Then he found the increased signal on the upper tspine. I do have T2 signal there, above any herniations. There's nothing mechanical in my cspine that would cause Lhermittes (no compression, etc.).
So...for my next MRI, I will have a 3T scan. And, he's planning to refer me to a guy in Houston who's a specialist in MNDs (motor neuron diseases) but who's also just an all around very good second-opinion type neuro (I looked him up). And tomorrow, I'm going in for EMG on the legs because he wants his own data on that, and I'll get the arms done some other time (I don't have time for both tomorrow). And, he mentioned also doing evoked potentials at some point. I'm getting blood done tomorrow for a marker of muscle degeneration and for thyroid hormones (which is way overdue anyway--I don't have a thyroid and have been on levothyroxine for a long time with no new assessment of my levels; I think they're fine and I'm on a good dose, but it can't hurt to check).
Looks like overall, I'm getting the full workup. If there's anything to find, this oughta find it. Of course, now I feel like I'm sorta stuck between Scylla and Charybdis (or, a rock and a hard place) with my options right now looking like either MS or PLS. The latter is really not much fun at all...like ALS, except very slow and not directly fatal.
That was the appt. Nothing conclusive, but definitely an abnormal neuro exam and more testing being ordered.
Well, this is a very good start and much improvement over a CD diagnosis. I am glad he is sending you to a second opinion neuro. At least you get to have a 3T MRI and all updated test results to take to the second opinion.
Please let us know when the appt is and I truly hope you get some answers.
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