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Thread: I'm going crazy...or almost crazy

  1. #1

    I'm going crazy...or almost crazy

    OK...the saga in brief:

    --1st neuro thought MS, sent for MRI, etc.
    --First neuroradiologist said "Cannot exclude MS."
    --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

  2. #2
    Senior Member skippy13's Avatar
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    Absolutely go for the third opinion. Then if necessary, go for a fourth. Do your own research with the info you have now. You'll find it. Just keep looking and dont give up. You shouldnt have to live with symptoms that can be fixed. Don't give up looking.

  3. #3
    Dear Bio,

    Let me try to distill the diagnosis. First, you are getting progressive sensory dysfunction in your right foot and right ulnar, and some paroxysmal facial pain. Second, clinical examination suggests non-specific hyperactivity of both hand and foot reflexes, clonus on the right, and trunk instability. Third, MRI’s indicate normal brain with possible T6/7 and an arachnoid cyst at that level, possible T8/9 herniation, and possible myelopathy above T6/7.

    The rest appears to be negative, i.e. no convincing evidence of pathology in the brain. For example, I have never heard of ependymal granulations but don’t think that it is anything to worry about. I don’t see any mention of plaques (which would suggest multiple sclerosis). There is no mention of cerebral or cerebellar atrophy, tumor, ventricular enlargement, and other problems that would be consistent with a serious neurological condition.

    I agree with the second neurosurgeon that the thoracic spine problem does not explain all or even most of your symptoms. Your foot problem may be peripheral in origin. Your hand and facial sensory problems are unlikely to be due to a lower thoracic cord compression. Without clear evidence of cord or root compression with associated neurological symptoms, most surgeons are reluctant to operate.

    Do you have other medical problems, such as lupus or diabetes?

    Wise.

  4. #4
    Doh. I guess I posted here six months ago and wandered off. I've just posted a new post about Lhermitte's. Haven't been to any new docs...just hanging fire. Last neuro said "RLS," I said, "Um, nope. Makes no sense." I just don't seem to have a single symptom of RLS.

    No, no lupus or diabetes. Had my thyroid removed in spring '07 because of zero TSH, high TPO, and really really rapidly growing enormous nodules. That's my only hx of autoimmunity personally.

  5. #5

    Crazy little thing called MS

    For starters, please remember that MS is very difficult to diagnose It took seven years for me to finally get a clinical diagnosis. Don't feel bad "firing" your physicians and finding others. The best place to really start is at an MS Center. The neurologists there are on their game as far as MS goes. It's a crazy disease with so many different symptoms. Mine started with a black spot in my vision. Some days my muscles twitch all day long (fun)!!! Other days I feel like my phone is on vibrate on different parts of my body (more fun). I was actually relieved when I got my diagnosis. The funniest part is, after my first bout with optic neuritis, I did research on the internet and knew immediately that I had MS. The first neurologist I saw totally dismissed that diagnosis because although I had three lesions on my brain, my spinal tap came back negative! I stayed on my game with research and finally found an excellent MS specialist.

    Your going to be fine, so stay strong!
    Dana Vigilante

  6. #6
    Dana, thanks for the reply. I have three lesions, too! Well, there are more (about a dozen or so), but only three that are >3 mm (I'm 40). Neg LP. It is frustrating, all around. I think the thing that astonishes me the most is that no two MDs with "neuro" to their handles are in agreement about a dx. Not a single dx in common among them. Not much science in that, I don't think.

    I am taking a break from the whole neuro thing, for several months now, actually, but when I do jump--or slowly hop--back in, I'm going to be very careful about my choice of doctor. Wish me luck.

    Bio

  7. #7
    Hi Biow - Your welcome for the advice. It's been afew months, so I hope that your doing a bit better. Just don't make yourself crazy over present symptoms or new ones that pop up (and they do pop up - at the most inconvenient times, lol). Just make sure your getting enough rest. That's key to keeping most symptoms under control. Also - drop anything that is giving you stress!!! And I mean that. If it upsets or irritates you - drop it (unless of course, the cause of it is family members, lol). Keep me posted and let me know how you are doing. Dana Vigilante

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