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Neurology  (Expert Forum)
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when to stop looking....
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MedHelp Member's Question

when to stop looking....

by ptatc, Oct 19, 2004 12:00AM
Otherwise a very athletic and healthy female, my symptoms began 2 yrs ago.  What a thought was virus began w/ general body aches (lower>upper)for 2 days and a pretty nasty headache.  Then, I began to experience what I thought was muscle cramps when I tried to walk.  These sharp sensations could be decreased by shuffling.  Finally, I began to experience some wierd trunk movements when I tried to stand still.  It looks like I'm jerking back towards center.  Total weight loss was 7 lbs.  My medical work up has been very thourough.  Cleared of vitamin deficiencies, autoimmune, porphyria, celiac, poisoning ect.  MRI has shown some small cystic structures that appear stable around L lateral ventrical.  

Then, I got significantly better over the next 5 months...almost completely normal.  However, I did seem to have small relapses occasionally.  The virus answer seemed to work for me!  Some concern remained about MS. CSF was neg.  

March of 2004 I was hit again and much harder.  My ataxia was severe enough where walking was difficult. Cramp sensations returned with headache and fatigue.  EEG showed general slowing on R temporal, NCV is being repeated as there are some amplitude changes between 03 and 04.  Weight loss:  15lbs.

Bottom line:  I clearly have had wonderful medical care.  I do not seem to "fit" in a specific diagnosis.  Although my truncal movement now occurs almost daily, I still work full-time.  Neurologist is now thinking genetic ataxia, but not confident that we'll pick the right test.  My question:  How important is it to know?  Should I spend time/money/energy?
Doctor's Answer

by CCF-Neuro-M.D.-CS, Oct 19, 2004 12:00AM
I believe it is important to try and determine a diagnosis. At this point it would be reasonable to have a second opinion at a large academic medical center. It does appear that you have had a good evaluation, and checking for a genetic cause would be reasonable. The reason why I would recommend going to a large center is because there is a greater chance that a doctor there has more experience (not a guarentee). Good luck.
Member Comments (3)

by Spring-02, Oct 22, 2004 12:00AM
Your posting sounds so similar to what I am experiencing and I too think a virus was responsible for my sypmtoms.  I had a rash around my waist and chest back in the fall of 2001.  I later developed a ganglion cyst on the top of my foot and then I had foot drop.  My left foot is still weak and I have left sided weakness.  The left leg feels heavier then the right and I have tightness and the internal vibrations throughout my body.  I also have tingling in my fingers, toes, lips and tongue.  Walking is difficult since I go sideways any time I encounter a change in slope. Going downhill is the worse as I can't seeem to stabilze myself.  I also have extreme startle response to any unexpected noise or movement.  Lately this is getting really embarrassing and scary as I react so strongly and nearly fall down.  I am female, age 57 in good health except for these weird neurological symptoms.  The symptoms do not extend past my knees or elbows.  My speech is affected at times, where I either stutter or can't' get the words out.  Prior to this, I was very articulate.  My cognitive functioning doesn't seem to be affected.  I am not depressed and I work very hard at trying to restore my physical functioning.  I go to the pool for arthritis work exercises and I worked with a personal trainer.  However, none of these exercises helped with the ataxia, speech or my over excited nervous system.  My reflexes are hyper and all clinical testing to date (MRI, EMG and EEG) were normal as well as bloodwork.  My ANA was slightly elevated and I have a history of Pernicious Anemia and MS in my family, but my B12 levels are OK, but I am taking oral meds, just to be sure. There are so many people out there with symptoms like this that are just falling through the cracks, since they are without a diagnosis.  I hope that your posting will result in more people pursuing the VIRUS theory, as I think our immune system is responsible for our individual reactions, and somewhere, somehow, something must have triggured it to be "out of kilter" or whatever.



Good luck and please post any new updates to your condition as it would be very interesting to discover the cause and what the future may hold for you and so many others in the same situation.



The Canadian

by mineandours, Oct 28, 2004 12:00AM
You are close on the virus theory...how about a bacteria such as Lyme?  I have neurological Lyme so I've been there, done that.  It causes all sorts of bizarre neurological symptoms, some even too indescribable for words.  Here's some info to get you started if you're interested.  One word of advice...you MUST see a Lyme specialist, no other specialist or 'ologist will due when it comes to Lyme.  Here's some info to get you started.  Email me if you have questions.  ***@****



Head, Face, Neck

Unexplained hair loss

Headaches, mild or severe

Twitching of facial or other muscles

Facial paralysis (Bell's Palsy)

Tingling of nose, cheek or face

Stiff or painful neck or creaking

Jaw pain or stiffness

TMJ – sudden onset

Sore throat

Loss of sense of taste

Difficulty Swallowing



Eyes/Vision

Double, blurry or dim vision

Increased floating spots

Pain in eyes, or swelling around eyes

Over sensitivity to light

Flashing lights

Optic neuritis



Ears/Hearing

Decreased hearing in one or both ears

Buzzing or clicking noises in ears

Pain in ears or sound sensitivity

Ringing in one or both ears

Pressure or feeling of fullness in ears



Digestive and Excretory Systems

Diarrhea

Constipation

Irritable bladder (trouble starting, stopping)

Frequent urination that is not normal

Upset stomach (nausea or pain)



Musculoskeletal System

Joint pain or swelling or tenderness

Stiffness of joints, back, neck

Muscle pain or cramps

Bone pain



Respiratory and Circulatory Systems

Shortness of breath, cough

Chest pain or rib soreness

Night sweats or unexplained chills

Heart palpitations or extra beats

Heart blockage



Neurological System

Tremors or unexplained shaking (especially at night)

Burning or stabbing sensations in the body

Weakness or partial paralysis/stroke-like symptoms

Pressure in the head

Numbness in body, tingling, pinpricks

Poor balance, dizziness, difficulty walking

Increased motion sickness

Lightheadedness, wooziness

Sudden jerking of fingers