West Nile Positive Worried about ALS

[jbedell]

In spring I ran fever with eye strain, headache & numb tingling under my right cheek. In August I developed a twitch under my right eye & muscle tics & spasms all over my body (mostly in my thighs and chest).

I finally went to the doctor in mid-august with numb face & cramping muscle fatigue. Did an MRI which came back clean & bloodwork which turned up nothing except for an IGG positive test for West Nile. The IGM was negative.

Convinced it was the West Nile, my doctor sent me to a neurologist who ran an EMG and NCT on my legs which showed no abnormalities. He, too, figured West Nile or some virus of the CNS.

Slight numbness & tics all over my body (but was almost always present in my left shoulder and the right side of my face) until October, when all symptoms abated. After a week, the skin on my stomach & back was sensitive like it was sunburned. Then my left shoulder got really wonky (like it was asleep) with easy fatigue.

A week or so later, I got numbness in my lower & upper lips in the middle of my mouth up to the tip of my nose. I started having trouble saying some letter combinations because of dry mouth and thick tongue. This persists.

Dr. gave me lexapro for anxiety. First dose caused cramping first night & I noticed my voice was hoarse.  I took only one dose.Since then I've had tremors all over constantly with muscle fatigue in left shoulder & forearm.  Left thumb feels weak b/c of forearm fatigue.  Shoulders & thighs feel weak b/c of constant tremors.

My question: Could the West Nile virus cause all of this? I'm terrified it's ALS related.

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

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   The symptoms you describe are not specific for any single disorder.  There are several things that make me doubt West Nile Virus (WNV) as the cause.  First, your serology (IGG positve for WNV) indicates exposure at some time in the past, and not an acute/current exposure (which would be IgM positive).  Many people are exposed to WNV and do not develop any symptoms (80%).  Of the people who develop symptoms, the most common is west nile fever assocaited with fever, fatigue, rash and lasts from 2-3 days up to several weeks. Rarely (1 person in 150) will develop more severe "neuro-invasive" disease in the form of west nile encephalitis (inflammation of the brain), west nile meningitis (inflammation of the covering of the brain) and/or west nile poliomyelitis (inflammation of the spinal cord).  What does not make sense for west nile neuro-invasive disease is that your MRI (usually abnormal in WNV encephalitis) and EMG (usually abnormal in WNV poliomyelitis) were reported as normal.  If you have not had a lumbar puncture then you should have one (usually abnormal in WNV meningitis).  Your cerebrospinal fluid (CSF) can be sent for west nile serology and PCR for West nile DNA products.  The most common CSF abnormalities are elevated WBC (mostly lymphocytes) and elevated protein.  Your symptoms sound mostly sensory and sound more like lyme disease than WNV to me.  Lyme patients can have abnormal brain SPECT scans that explain their symptoms even when their MRIs are normal/non-specific.  I would ask your doctor about lyme, even if your tests are normal.  Your symptoms do not sound like ALS.  In summary, I would recommend a lumbar puncture, Brain SPECT scan and a repeat EMG (6 months form your first).
I hope this has been helpful.

[klag]

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[angela4507]

I would definitely not worry about ALS.  The symptoms you are describing are very much the symptoms you can have after a viral illness such as West Nile.  For more information, view any West Nile websites and you'll see a lot of the same symptoms.

[jbedell]

I saw my neurologist again today who said the EMG on my legs in August would have ruled out ALS in my limbs even though he did not check my upper body.  Since I'm quite panicked and am still having trouble speaking normally, especially since I still have terrible dry mouth that makes me feel tongue tied, my neurologist has scheduled another set of EMGs on my left arm and bulbar muscles mainly to appease me (not b/c he feels they are necessary).

He told me today that clean tests on these areas would absolutely rule out ALS.

He seems to think all my symptoms are anxiety-driven (even in my speech issues) now.

For the physician answering these posts:

1) Can I be confident in my neurologist's opinion that clean EMGs on my legs in August and clean EMGs on the pending left arm/bulbar muscles signal no ALS even with some perceived difficulty speaking?

2)Could the West Nile IGG positive test have anything to do with the symptoms I've listed here and above?

Please help.  I'm terribly afraid of the possibility of ALS.

[vega1318]

If this were ALS, you would most likely not suffer from any numbness or sensory problems.  And EMG is very sensitive at picking it up, even if it was done only in the legs and not arms.  West Nile is tricky as it can cause long-standing problems, but I think it is usually "Monophasic" meaning it comes, does its damage and then goes away...   it is still possible though.

I would have your doctor check your thyroid, vitamin B12, check you for Sjogren's, Lyme.  But best of all, try to relax about ALS, you most likely don't have it -- trust your doctors.

[mineandours]

Hi. Definitely NOT ALS symptoms. I have a friend who recently passed from it.  Sounds more like neurological Lyme disease to me and you should seek out a Lyme specialist because you can have it AND still have a negative test result. You could also be at risk for any co-infections for which you should be tested. Here's a symptoms list. (I have neuro-Lyme and it took two years to figure it out despite seeing 14 various doctors.)

Musculoskeletal System
Joint pain or swelling or tenderness
Stiffness of joints, back, neck
Muscle pain or cramps
Bone pain

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
Pain in spinal column

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. (If it was mild, you may not even recall this.)

Eyes/Vision
Double, blurry or dim vision
Increased floating spots
Pain in/behind 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 (tinnitus)
Pressure or feeling of fullness in ears

Digestive and Excretory Systems
Diarrhea, irritable bowel
Constipation
Irritable bladder (trouble starting, stopping)
Frequent urination that is not normal
Upset stomach (nausea or 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


Psychological well-being
Mood swings, irritability, rage
Unusual depression, panic
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, brain fog
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

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, hoarseness
Loss of sense of taste
Difficulty swallowing, throat spasms

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

Males only:
Testicular or pelvic pain

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. Ticks are on the move at 35ş and above. It’s a year-round problem.
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 or occur once and never occur again.
4. It is possible to have Lyme disease and have a negative test result. After Lyme bacteria enters your system, it tricks your immune system into no longer producing antibodies to fight it, hence, a negative test result. There are also other numerous factors that can affect the results.
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. It is a cousin to the syphilis bacteria and very difficult to eradicate.
6. It takes a LYME SPECIALIST to diagnose, test for and treat Lyme disease and any of its associated co-infections. To find one go to www.LymeNet.org. or www.ilads.org. Lyme specialists do not require a referral.

NOTE: Everyone may have symptoms that appear on this list; however, it does not mean he/she has Lyme disease. If one has numerous symptoms on this list and no other explanation for them, consider Lyme.

[John_Madison CT]

I can tell you from first hand experience that Anxiety can cause all kinds of terrible symptoms.   I had a long long list of symptoms that made me feel like I was dieing.   They were all anxiety driven.

It may help you to get on an anti-anxiety medicine.  I took Zyprexa and Paxil and together they changed my life. (for the positive !)

[medemwom]

I too am experiencing similar symptoms (numbness, tingling, involuntary spasms) after confirmed West Nile virus in late August.