What tests should I have with these symptoms?

[Linda Davis]

Please take a look at my symptoms and tell me what could possibly be wrong.  I have been trying to get a diagnosis for 2 years with no success.  Please help!  I'm seeing a third neurologist next month, what tests should I ask for? I'm 38 and own a health club.  

Facial weakness and movement on the right side w/ movement in lower jaw and neck. (movement is constant)
right ear rings constantly
imbalance (visually depended) two balance tests (7 years)
dry eyes and mouth
swollen subm. glands
noise induced dizziness (certain pitches)
noise induced ear pain (loud noise)
muscle weakness in hands, arms, legs and mouth.  Throat tight. (especially when exercising)
joint pain - knees, hips, (knees get warm during exercise)
muscle fasciculations everywhere especially calves
muscles cramps in calves and feet.  Legs get tight during exercise.
raynauds - tenderness under armpits.  Restless feet and legs
Tests: MRI herniated disc C6-7 - Blood test -negative autoimmue
balance test - abnormal. Two neurosurgeon not the disc.  Inner ears are fine. ALS? Sjogren's? I'm so worried....Linda

[Reenie]

Linda, I have many of your same symptoms.  E-mail me if you want to chat confidentially.  I am 39 and a Mom of three.  ***@****

[Linda Davis]

My new neurologist ordered an ABR.  During the test I had this huge sensation in my head.  TWICE!  Maybe now they will be able to sort this all out.  Can you have an acoustic neuroma without hearing loss?  Maybe that's what it is.  I can't wait to find out.  The not knowing has been horrible.  I just want it to be all over.  Thanks for this forum.  It really helps.

[Linda Davis]

Trying to figure it out yourself is useless.  3 Years ago when they found the herniated disc I wasted one year treating it.  After seeing 2 Neurosurgeons - one said it was a sifnificant herniation the other said it was small.  Who to believe?  It's very frustrating.  It takes weeks to get appointments and months to go through tests and get answers.  The waiting is the hardest.  Get your doctor's e-mail address, it's the easiest way to keep in touch.

[Billy Sutton]

Uncaring or busy doctor.I have been seeing a neurologist for about 3 months. I went for numbness and burning sensation on left thigh. I then started getting a stiff neck. The doc ordered a mri, he said he saw a small focus of myelopathy with myelomalacia involving spinal cord at c-5 and c-6 with small extruded disc material. He was worried about a tumor and sent me to a neurosurgeon. The surgeon wanted his own mri before telling me something. He was to make me a appointment but has never called back and its been 2 weeks. Is this normal? And doesnt the finding sound like a disc instead of a tumor?

[robert brock]

I am sorry that you took it the wrong way, I was talking about my doctor taking so long to call to set up a time for mri. Sorry for the confusion. bill

[CCF Neuro[P] MD, RPS]

Dear Billy Sutton:

You don't even know me nor have you meet me, and you call me an ucaring doctor.  Thanks.

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear Linda:

Sorry to hear about your symptoms.  What did the neurological exam pick up?  If the neurological exam was normal and no detected weakness was uncovered, then you do not have ALS.  Other things to confirm this is the length of time you have had your symptoms, sensory symptoms of tenderness, and the absence of neurological deficits (as judged by your neurologists, I am assuming this).  Since an EMG was not ordered by the previous neurologists I would assume that there were no deficits they picked up.  I would also assume that you have not had any abnormal labs such as sedimentation rate, ANA, CBC, electrolytes, etc or you would have mentioned them.  One might see an autoimmune disorder with broad symptoms such as you describe, but usually the laboratory workup picks up something abnormal.  There is a remote possibility that a dysautomonic process might be occuring.  Post-viral syndrome also comes to mind.  I am not sure what the balance test might be, be either of the above could possibility give you imbalance.  Anxiety can also produce symptoms that you describe and if there are things going on in your life that are really stressful, this may also be a possibility.  

Sorry, I'm not much help.  It is just difficult to give etiologies with the information at hand without previous results and current neurological examination.

CCF Neuro MD