Neurological symptoms/No diagnosis

[shihtzujane]

Retired on disability in '94. VERY complicated. Thoracic spinal cord cyst around size of golf ball.  Started w/ numb spot bottom of left foot, intermittent:  double vision, tingling: feet, fingers; feelings like electrical shocks; feeling like I had spilled water on right thigh; repeated UTIs; muscle spasms; burning feeling left torso; burning sensation almost along what felt like a line from left elbow to left wrist.  MRI of brain was negative.  Spinal tap was negative.  Visual evoked response was negative.  Nerve conduction found slowing in nerves in right side of body, no firm diagnosis.  ...  Maybe ten years later, urodynamic found nerve damage to vagus nerve in (?) bladder.  Around five years later, EMG in throat found partial vocal cord paralysis.  Former employer has repeatedly denied suspected exposure to chemicals.  Repeated MRIs of brain and spine have been negative.  Spinal cord cyst has not grown.  Old neurologist said, "You have microscopic MS."  Next neurologist, "Certainly not."  Next (head of dept.), "Peripheral neuropathy, or, well, I have no idea."  Physiatrist just ran EMG, this time it was negative and he said you DON'T have neuropathy.  Got online, read that small fiber neuropathy doesn't show up in EMGs.  So, what the heck?  I'm thinking neuros in St. Louis are rude, don't know much, pardon me, or at least the ones I've seen. Frankly, first neuro I saw spent about two minutes, ran NO tests, turned to his med student and said, "Tell her she'll live" and walked out of the room.  I'll tell - this was at preeminent Johns Hopkins, thank you very much.  Are neurologists just so frustrated that they can't help much or what?  They've put me on gabapentin (still on it, gained 35 lbs), Topamax, tizanidine.  I also have Hashimoto's and fibromyalgia.  I understand that fibro can cause these symptoms, but not nerve damage.  Help?!

[shihtzujane]

Don't know if it's related or not.  I've added neck pain and bad pain on my skull above my ears - daily for several weeks.  Constant for four or five days.  Was at physical therapist and I told her when I turn my head to the right everything goes black and her exercises give me excruciating pain.  She just told me, "No pain, no gain."  Called internist again.  He jus scheduled ultrasound of carotid arteries for tomorrow morning.

[S. Kaul, MD]

Hi there!

I understand the situation you must be going through with definite symptoms and no definite diagnosis. Unfortunately without a detailed clinical evaluation it would be difficult to comment specifically on the situation. With normal MRI/ EMG/ NCV studies, possibilities that may need to be considered include infections, inflammations, micronutrient deficiencies, hormonal/ endocrine issues, vascular causes, fibromyalgia etc. I would suggest considering a detailed evaluation by an internist and depending on the cause diagnosed/ suspected, it can be managed accordingly or specialist care may be sought.
Hope this is helpful.

Take care!