Unexplained numbess and myriad other symptoms - VERY worried is ALS

[bonecat]

Hi, I'm 40 yo male and have been having odd neurological symps since April.  Started when I fnd a rnd reddish rash on the back of my calf that itched a lot.  Dnd't think much of it at the time.  A few weeks later I suddenly got numbness in right forearm down to my hand and a bit of pain.  Also felt cold and swollen even though visually it was not (almost like your arm feels when someone takes your blood pressure).  This followed with similar numbness into my legs and other arm and a sharp pain up at the top of my leg where it meets my butt.  At this point I went to see a Neurologist.  Checked me over, thought maybe it was due to a pinched nerve, and ordered an MRI.  MRI of neck and upper spine clear.  Other myriad symps have followed inc one day of blurred vision, basically feeling like I have a low grade fever (when the thermo says not), no energy, muscle cramp in the front of my calf, fascilations in various muscles, often moves around.  Latest symptom that has not gone away feels like a walnut in my throat and the feeling like my voice box is tight. No probs with speaking tho. Feels like I have to clear my throat often.  I have also had lots of heartburn lately.  Also must mention that I have had some really bad lower back pain that raidiates up to neck when I sleep.  Also found another 1 of those rashes near where the pain in butt is. Can only assume has always been there.  Feel fluey/weak all over but # chins on a bar and pushs are same. In addn 2 MRI had 2 sets of blood work all nrml. Both inc lymes test (elissa/west blot on 2nd I thnk). Thx 4 reading

[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 one disorder.  They do not sound like ALS at all (good news). ALS starts with motor weakness and atrophy that is progressive.  Your symptoms started with rash (?related) and sensory complaints (numbness/pain).  The fasiculations are not concerning in the story that you have provided.  They can be a normal finding, come on with exercise, occur with metabolic problems, occur due to a viral infection and rarely occur with the other symptoms that are associated with neuromuscular disease.  Some people with ALS have "bulbar weakness" that comes about with changes in speech, problems swallowing, and drooling.  The symptoms you describe are likely related to your reflux (heartburn) and I would recommend taking pepcid 20mg twice daily for starters and see your internist.  Regarding you flu like feeling and sensory symptoms, I would recommend blood work to look for inflammation including ESR and CRP.  A lumbar puncture may also be helpful to evaluate for a chronic viral meningitis.  Regarding your back pain, I would recommend an EMG to find the source of the dysfunction (this is also the test that would be used to work up ALS).

I hope this has been helpful.

[mineandours]

Hi...The symptoms you describe are some of the hallmark symptoms of neurological Lyme disease. I had the throat thing, too, and I could only describe my symptoms as horrifying.  The fact that you were tested for Lyme and your results were normal does not mean that you don't have it.  The tests for Lyme are very unreliable and the Western Blot is only 65% accurate at best. Physicians are not aware of these facts.  I went through a parade of 14 doctors over the course of two years and the diagnosis was missed by all of them.  It is ESSENTIAL that you find a Lyme specialist and get tested.  There is also the added complications of co-infections that can occur with Lyme, and, oh, they don't all respond to the same antibiotics.  I am currently being treated for neuro-Lyme and have been on antibiotics for 2.5 years.  I'm about 97% recovered.  Once that bacteria gets into the pristine envoronment of the central nervous system, all sorts of strange happens.

To find a Lyme specialist, go to www.LymeNet.org and register.  Click on Flash Discussion and then on the forum called Seeking A Doctor.  Post there with your city and state.  It's an excellent site for support, also.  Print and read some of the online publications.  You will see LLMD a lot on the site and that stands for Lyme-literate MD.

Good luck.  Here's a symptoms list for you but it's not necessarily all-inclusive since there are SO MANY different ones:

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 – sudden onset, jaw spasms
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.

[bonecat]

Hi and thanks to everyone for posting!   To ihatepvc's, I live in southeast UK however I was in Helsinki Finland when this all started and 6 months previous did a big hike in Litchfield Connecticut.  I understand that both of these places have high incidence of Lymes.  I have never wished to have a disease but sure would rather it be this than ALS!!  

To Carol in PA, the rash on my calf went away however I did get a pic of it before that happend.  The other one near my butt is still there and I am going to snap it.  

I am in contact with friends in the US that know a Lyme Lit DR and he will have a chat with me.  Will certainly talk to my Neuro here too.  Thanks again all and God bless.

[Shanghai SD]

Just to add:
There are also 2 doctors in the UK that understand Lyme.
You should join EuroLyme - a yahoo based support group - the people there can give you the information for the doctors.

I also feel I was possibly infected in Finland. I had all of the symptoms you had. Nuerologists and infectious disease doctors I saw all had no idea and never even suggested Lyme disease. It wasnt until I posted here that the Nuero said it was most likely.

Good Luck

[norikyaki]

Well, the lack of energy, numbness, and "lump in the throat" feeling could be indicative of a thyroid problem. Did you have that checked out?