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What in the world is going on?
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What in the world is going on?

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
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5 Comments Post a Comment
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Can facial sensations be caused by the spine??? This does not seem logical to me . . . but logic is not my best quality any longer :)

Sherry
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Avatar_m_tn
Hello Bio,
   Craig is a scientist and when his problems started in 2004, he really needed to understand exactly what was going on.  Drove me crazy a little bit since I used to work as a nurse.  Anyway, he went to a year of PT and then when he could not swim or lift his legs when supine, he again went to more docs (in 2006).  Then he found that he had lost 40 percent of his bone density in his spine.

   So he went to three neurosurgeons and two medical spine specialists and had seven MRI's done from 2006 to 2007..  Every neurosurgeon said that unless there is severe cord impingement and spinal cord stenosis, you should not have a spine operation.  That to have symptoms of leg weakness, motor loss, and parasthesias you really  need to have alot of cord involvement.  Only the one orthopedic surgeon wanted to operate.  Of course Craig has no cord impingement so then surgery was not done.

  I would say with a positive Romberg and some of your other signs. you have something with the CNS going on but may have to wait and get worse before a neuro will intervene and seek a diagnosis.  

  Have you had a Western Blot for Lyme?
  I would recommend going to neuro #3 but do not take other physician reports and don't tell the neuro you were at two other neuros.  Some get their ego out of whack when you tell them you have been to other docs.

  Good Luck.
  Elaine

  
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Since when is it normal to have 10 lesions in your brain (unless you are 70)??  I guess it is confusing to me that you have MORE lesions than you did before and they are calling your brain "normal".  Please enlighten me if I am overlooking the obvious here.

I have to agree w/Elaine about the egos of Neuros.  I didn't tell #1 about #3 or #4 because of how he acted about #2 (MS Specialist)  I really think that I have reached my own personal limit on seeing different neurologists!

Have you thought about having an LP done?  I finally agreed to one since all of my doctors were recommending it.  

I really hope that you can find a diagnosis for all of your symptoms.

Stacey
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Sorry to read you are having so much hassle with the neuro's, as though you haven't enough to manage.  I agree with Stacey, LUMBAR PUNCTURE would enlighten you as you a possible diagnosis of MS, albeit not want you want, but you need to know what you are managing and can then receive support.  Go for new Neuro, out of area, clean sheet and dont give any history of previous consultations. An MRI with 10 lesions and a positive lumbar puncture will be conclusive if lesions consistent with appearance of demyelination.  Good luck and seek new Consultant without giving any previous opinions of the other neuro's and request both MRI, with Gadolinium if necessary, and query a lumbbar puncture, they are not too uncomfortable and can be diagnostic.  You then know what is the way forward.  Stay positive and let us know how you get on.
Getting a diagnosis can take years, but you've been to see enough neuro's so travel a little and get a "clean sheet" of history, symptoms, your anxieties and that you need some questions answered.
Take care and remember nothing in medicine is black or white, there are many grey areas in which you fall at this moment in time, but hopefully you will finally be diagnosed with a condition which you then manage.
Let us know how you get on please. Good luck.
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I've had the LP--that's where the "normal CSF" comes in; sorry I wasn't clear enough on that. No O-bands, no inflammation, etc. Normal. The T2 hyperintensities are simply there...some 3mm, some smaller. Nonspecific. No hx of migraines, and I just turned 40. MRIs are 3 months apart, with contrast, brain and all spine.

Thanks,
Bio
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