when to stop looking....

[ptatc]

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?

[CCF-Neuro-M.D.-CS]

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.

[Spring-02]

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

[mineandours]

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 or entire limbs

Psychological well-being
Mood swings, irritability, rage
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Overemotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep

Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

Females only:
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge

Males only:
Testicular or pelvic pain

General Well-being
Unexplained weight gain, loss
Extreme fatigue
Swollen glands
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.  (You may not even recall this.)

LYME FACTS
1. You do not have to recall a bite or have gotten the target rash to have Lyme disease. Less than 50% of people with Lyme do.
2. The tick that carries Lyme is as small as the period at the end of this sentence and their nymphs are nearly microscopic.  
3. You do not have to experience ALL of these symptoms to have Lyme disease.  It is also typical for many of these symptoms to come and go.
4. It is possible to have Lyme disease and have a negative test result.  After it enters your system, it tricks your immune system into no longer producing antibodies to fight it, hence, a negative test result.
5. Lyme bacteria hide in the spinal fluid, bone, tendons, muscle and nerve fibers and tissues and in many cases are not “floating” around in the bloodstream where they can be picked up on a test.
6. It takes a LYME SPECIALIST to diagnose and treat Lyme disease and any of its associated co-infections. To find one go to ***************.
or www.ilads.org.  They do not require a referral.