West Nile Diagnosis with Bulbar ALS Symptoms

[jbedell]

Hello,  hoping someone can help me with Bulbar ALS symptoms.  In spring I ran fever and thought I had a sinus infection,with eye strain and numb tingling under my right cheek.  In August I developed a twitch under my right eye and muscle tics and spasms all over my body (mostly in my thighs and chest).

I finally went to the doctor in mid-august with numb face and cramping muscle fatigue.  Did an MRI which came back clean and 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.

Numbness and 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 and back was sensitive like it was sunburned.  Then my left shoulder got really wonky (like it was asleep) with easy fatigue.

After a couple of weeks, I got a numbness on my lower and 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.

Dr. gave me lexapro for anxiety.  First dose caused cramping last night and I noticed my voice was hoarse and my tongue was spasming at rest and protruded.

My questions: Would Bulgar ALS show up in that order in a matter of a couple of days and do spasms precede tongue atrophy or come with it? Or do all my other signs point elsewhere?

[Pussywillow]

Call this number for help DAMS National Office at 1-800-311-6265.
DAMS means Dental Amalgam Mercury Syndrome.  This organization provides more information to people with symptoms like yours.  I had my fillings removed I am going through chelation therapy.After 31/2 years in the wheelchair and loosing my ability to speak, I am out of the wheelchair and I am now able to speak.  Chelation takes anywhere from 1 to 5 years to up to 10 years.

Also google "sympoms of silver fillings"
Good luck.

[beentheredonethat25]

Zeke-
Maybe you could e-mail me and we could talk about this for awhile in depth.  I have a lot of the same symptoms and feel the same way mentally.  PLEASE do not do anything permanent!!  Contact me RIGHT AWAY!!

[Pussywillow]

I believe that you should check into the possibility of being mercury poisoned by silver fillings.  I too suffered from similar ailments, I was in a wheelcahir for 31/2 years.  In Sept 2006 I lost the ability to speak. Since I removed the mercury fillings and I am undergoing chelation treatment for mercury poisoning I am out of the wheelchair and no longer requre a voice amplifier.  If you have silver fillings you should look at the website below
http://www.home.earthlink.net/~berniew1/damspr13.html

You may also google"safe removal of dental amalgams"
If you do remove dental amalgams(silver fillings) safe removal is very important also detoxing is nescessary for cure of symptoms.

Cheers

[Pussywillow]

I also wanted to tell you that if you go to your regular dentist he/she may tell you that the amalgams are safe and pose no health risk once set.  The dentist must tell you this as he/she is liable to loose his/her license by providing this information.  The dentist told me that my fillings were safe 2 years ago when I asked and in Oct/06 she still insited that they were safe even if I had gotten so bad.  I insisted that they be removed; however, it is not advisabe that your local dentist remove your fillings.  

for more inforamtion call DAMS National Office at 1-800-311-6265. or google Dental Amalgam Mercury Syndrome

Also results may not show up on any blood test or brain MRI if you are mercury poisoned, you may want to request a mercury test from your doctor.  Take into consideration that your true level of mercury may also not show up and your doctor may try to tell you that it is normal.  Mercury showed up high in my blood even after removal of the dental fillings and after I started chelation.  Yet I was told that this was normal, believe me no level of mercury in the blood is normal. Infact the normal environmental exposure should be 0.00 to .005.
I was labeled a Psychiatrist patient becuase the doctors could not find a diagnosis. Luckily I met a Psychiatrist who is familiar with mercury poisoning symptoms and has cleared me of any mental illness.
Good luck

Cheers

[zeke1]

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

Neurological System
Tremors or unexplained shaking (especially at night) Yes
Burning or stabbing sensations in the body Yes
Weakness or partial paralysis/stroke-like symptoms Yes
Pressure in the head Yes
Numbness in body, tingling, pinpricks Yes
Poor balance, dizziness, difficulty walking Yes
Increased motion sickness No
Lightheadedness, wooziness Yes
Sudden jerking of fingers or entire limbs Yes
Pain in spinal column Yes

General Well-being
Unexplained weight gain, loss No
Extreme fatigue Yes
Swollen glands Yes
Unexplained fevers (high or low grade) Yes
Continual infections (sinus, kidney, eye, etc.) Yes
Symptoms seem to change, come and go Yes
Pain migrates (moves) to different body parts Yes
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.) Yes

Eyes/Vision
Double, blurry or dim vision Yes
Increased floating spots Yes
Pain in/behind eyes, or swelling around eyes Yes
Over sensitivity to light Yes
Flashing lights Yes
Optic neuritis Yes

Ears/Hearing
Decreased hearing in one or both ears No
Buzzing or clicking noises in ears No
Pain in ears or sound sensitivity Yes
Ringing in one or both ears No
Pressure or feeling of fullness in ears Yes

Digestive and Excretory Systems
Diarrhea, irritable bowel Yes
Constipation Yes
Irritable bladder (trouble starting, stopping) No
Frequent urination that is not normal No
Upset stomach (nausea or pain) Yes

Respiratory and Circulatory Systems
Shortness of breath, cough Yes
Chest pain or rib soreness Yes
Night sweats or unexplained chills Yes
Heart palpitations or extra beats Yes
Heart blockage

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

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

Head, Face, Neck
Unexplained hair loss No
Headaches, mild or severe Yes
Twitching of facial or other muscles Yes
Facial paralysis (Bell's Palsy) Maybe
Tingling of nose, cheek or face Yes
Stiff or painful neck or creaking Yes
Jaw pain or stiffness Yes
TMJ

[zeke1]

No, I have not.  I am very concerned because some of my symptoms sounded a lot like HFS but also differ very much in other aspects.

The latest problems I have been dealing with are:
1.  Pain in my jaw and chin that comes and goes
2.  Very tense check muscles (relived during sleep but come back after awakening)
3.  Pain at base of skull (back side of my neck)
4.  Pain that comes and goes in my teeth, numb top and bottom lips
5.  Trembling for no apparent reason
6.  Tongue that feels like it spasaming and moving to back of throat (tip feels like it burned, sides of tongue feel stiff/tight) though this has recently subsided
7.  Inability to deal with emotional situations (watching a movie with a strong scene)
8.  Weakness in both biceps
9.  Headaches after awakening
10. Inability to sleep face down (causes sever pain at base of neck..see 3 above)
11.  Get cold
12.. Dizziness
13.  Feeling of being very tired and not wanting to get out of bed
14.  Some slight drooling with numb lips
15.  I have NO distortion of my face other than the sensations of numbness or pain
16.  Pain at top of skull
17.  Hiccups...something that I rarely experienced in my life
18.  Nausea that has recently subsided.
19.  Weakness on forearms

Most of these recent symptoms began about 2 months ago as of today.

Before I had dry eye on right side and what was thought to be blepherospasams dominant on my right side of my face (said my neuro-opthamologists).  I have known for years that I should never sleep on my stomach because I get intense headaches that come from an intense pain developed at base of skull.  I have seen a chiroprachter that treated me for neck pain.  It goes away but comes back anytime I sleep on my stomach.  I was involved in two accidents when I was younger that I did not treat at the time (bullet-proof at the time).  I was also very involved in mammal specimen collection in college (could have been more careful).  I have several tooth fillings.  From a young age I have gotten pain behind my eyes when under a heavy amount of stress!  If I sit to long I begin to get a tingling sensation around my head (may be do to looking down to long...bad neck).  I have been diagnosed with sleep apnea and underwent two sleep studies that confirmed sleep apnea.  I have the machine but the medical supply company forgot to send me the mask.  Four months ago I had surgery for a deviated septum.

I have mentioned some of these other symptoms since I have suscpected:
1.  Lyme Disease
2.  Numb Chin Syndrom
3.  Mercury Poisoning  

I strongly suscpet Lyme disease since it is the only thing I have read that could explain so many ailments at one time that come and go.  I was certainly in a position to have picked it up due to my outdoor lifestyle.  If you have read my profile you would have known that I have other complaints such as breathing problems and constipation that come and go.  I had some lab work some time ago for Lyme Diseas but it came back negative.  I had a physcians assistant and I am very sceptical they are up to the task anyways to determine if Lyme Disease is hiding in my body.

This year I have been to the ER about 7 times (6 breathing problems, 1 for stiff / spasaming tongue).  I have had one MRI in 2005 and 2006 of my brain.  Both came back negative.  I had one MRA that came back negative.  I have had Anti-SSA and Anti-SSB for Sjogren's, Lupus one other disease I can't remeber the name of.  All came back negative.  I have had 2 CT scans these past two years.  Both came back negative fro anything.  

As you can see I seem to be a damn mess.  I am at my wits end and have seriously considered ending my problems permanenty before I can no longer mentaly function.  My neurologist gave me tegratol which made me feel very "spaced-out."   I don't want to take such a dangerous medication since the side effects are the same symptoms I have been dealing with.  If you where to see me you would not be able to discern that anything was wrong with me untill my right eye began to spasam.  Of course this would be the tip of the iceberg.  I will push my neurologist to give me a referrel for more in depth analysis of Lyme Disease, Numb Chin and Mercury Poisoning.

If you can offer any help or suggestions I would appreciate it very much.  These problems are isolating me from my wife and kids.  In the morning while showering for work I find it is the toughest part of the day since I know I will have a great opportunity for permanent relief when my wife goes to work and the kids go to school.  Later, I look around at the pictures on the walls and memmories come back of happy times and I pull back and try for another day.  I am not sure I can go on forever like  this.  At some point it has to end.  Sorry for this long spill but it seems that no one around me knows what I am going through.  It is as if they were deaf to me when I dare to speak of these problems.  This computer seems to be quickly becoming my only link to anyone outside of myself that can even begin to understand my situation.

I do admit that I have been under a lot of stress lately due to my job.  I have also been denied rest also due to my job.  I have had about 4 hours of sleep per night the last two weeks.  Maybe my Sleep Apnea coupled with the limited sleep time has driven me to extreme exhaustion.  I just dont know anything anymore!      

Zeke1

[jbedell]

Thanks very much for the info.  I'm seeing my neurologist Monday and will definitey ask his opinion of Lymes involvement.

In my initial bloodwork, they did check for Lyme' exposure, but the result was negative.  I'd be happy to give the test a second go, however.

All best,
Jack

[mineandours]

Hi.  Been there done that for two years and saw 14 doctors.  It sounds like you may have a good case of neurological Lyme disease, however, you MUST see a Lyme specialist to be properly diagnosed, believed, and treated. Please take advantage of my experience.  Here's a symptoms list.  Go to www.LymeNet.org and register. Good luck, Carol

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
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
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

[jbedell]

Thank you for your answer.  I'm just so panicked like many people on here.  Even though my bloodwork shows viral exposure, I can't shake the feeling that something else is wrong.

In the last couple of weeks after I noticed my tongue feeling like th etip had been burnt by coffee, I've worked my tongue around in my mouth so much that it's sore around the edges and when it began twitching around the edges, I got scared.

As I said in my first post, I started to have trouble forming some consonant sounds with my tongue and thought immediately of bulbar onset.  For some reason, the dryer my mouth gets, the harder it is for me to speak properly.  Chewing gum seems to help with that.  I also feel like I'm not moving my tongue normally as I speak, maybe due to the soreness?, but I have full range of movement top to bottom, side to side, all around my teeth inside and out, I can roll my tongue in all directions.  In fact, I do all of these things constantly throughout the day, obsesively I guess.

Does any of this sound like something I should be concerned with in terms of bulbar onset?  Would trouble pronouncing "th" and "st" sounds be signals of the disease without other tongue weakness/atrophy/fasciculations or Ny trouble swallowing or breathing?

[young at heart]

Usually ALS does not present itself with numbness.With the EMG being okay,these symptoms seem to point towards a virus.If symptoms are persistant and new ones occuring you should contact your DR.This would releive your mind.

[jbedell]

I forgot to add to my novel above that my throat is slightly sore with my hoarseness and I have some feelings of muscle cramping in my left wrist/thumb area.  My breathing also feels a little shallow.