OK...the saga in brief:
--1st neuro thought MS, sent for MRI, etc.
--First neuroradiologist said "Cannot exclude MS." (pics in my Photos)
--But CSF negative, Neuro 1 says, "MRI in on year."
--Having increasing sx, go to Neuro 2.
--Neuro 2 says, "Brain MRI normal, but look at this T spine."
--Have CT/myelogram.
--T67-herniation, "mild-moderate impingement," arachnoid cyst at same level. Also, T8-9 herniation. No radiculopathy.
--Neuro 2 sends me to Neurosurgeon 1.
--Neurosurgeon 1 says, operate on T spine for herniation, preferably ASAP. Sends me for 3-mo f/u MRI brain, t-c spine.
--Neuroradiologist 2 says "brain normal" (looks like previous brain with a few more spots, total 10 t2 hyperintensities); myelopathy in cord above t-spine herniation. Does not see/mention second tspine herniation. Says largest spot on brain (3x5 mm) is "ependymal granulation."
--Neurosurgeon 2 (sent for 2nd opinion) says, Tspine not responsible for symptoms, operating not necessary, should just monitor. Can't explain basis for the suite of symptoms/signs.
WHAT? WHAT? WHAT?
Symptoms: progressive numbness/stiffness/tingling/paresthesias in right foot. Ulnar-related fingers of right hand numb; paresthesias. Shocks across face (nowhere near the pain of trigeminal neuralgia).
Clinical findings: Wow, these vary from MD to MD, but--Hoffmans (have been told it's "significant" OR that I'm "diffusely hyperreflexive); clonus in right and hyperrflexia (again, findings differ), +rombergs. CMAPS/SNAPS amplitudes in right hand half that of left. One findings of positive waves in pollicis brevis motor nerve of right hand.
I'm so confused I could just ... stop going to doctors, I guess. I had resigned myself to the t-spine surgery but also had hoped that it would fix what is obviously something progressive. I'm relieved that I will be able to spend my summer being active with my children, but...now I'm just hanging. Do I go for a third opinion on any of this? I actually have a third-opinion appt with Neurologist 3 next week.
Any insight, advice, words of experience would be greatly appreciated. I'm a scientist, and while I can live with my symptoms, which have not reduced my quality of life by much, the fact that these findings cannot fall into place to create a complete picture is kind of making me crazy.
Thanks,
Bio