SCARED FOR ALS

[nellie88]

Dear all,i have posted my concerns to tha ALS forum but i also thought of posting them here as well
Im a 22 year old female..In the past year i have experience weird symptoms.Muscle fatigue weakness, cramps especially localised in right arm and leg..
The past 2 weeks i have noticed that my leg muscles (back ,buttock, leg, calf) twich a lot of times during the day.This week it has become more intense..
Especially when im laying my legs especially in my right one(back ,buttock, leg, calf).It goes away after i move...I do not exercise much so it couldnt be from that..Also my torso muscles seem to twich and today i have noticed that my left cheek(the area below my eye) has started to have several twiches..
I havent noticed any profound problem in walking yet thankfully but im terrified it could be ALS.The symptoms are and it worries me...I know that from my age is not typical but i laso know tha it does happen..
Please tell me what you think..
THANK YOU

[bcb1200]

Lyme:

Hi.  Have you considered lyme disease?   I know many lymies who were first told they had ALS, MS, or Parkinson's (sometimes for years) when it was really Lyme and related co-infections (Babesia, Bartonella, etc)

I'm copying a message I sent to another poster on here recently.  Just trying to spread the word as it took me 4 months to get diagnosed properly.  But...I have met other lymies who were unwell for 5-10+ years before being properly diagnosed and finally getting well after proper treatment.

Message below.

See the symptom list far below.  (This is only some of them...there are really more than 70.)

The key to getting diagnosed properly is the doctor.  I had a terrible time back in Feb-April of 2010 with weird symptoms, dizziness, anxiety, forgetfulness, brian fog, twitching, etc, etc.  I had dozens of tests, including a lyme ELISA test...all normal.  I was told it was stress, that I had a somatization disorder, and told to go on Prozac and seek therapy.  I"m only 35!  

I then found another doctor who happened to be an ILADS trained LLMD (Lyme Literate MD).  She did a Western Blot test from a lab called Igenex.  I came back highly positive for lyme and some "co-infections" (Bartonella and Babesia.)  I never had a rash nor do I remember a bite.  Lyme is in all 50 states.

I'm now in treatment and am 90% better!   I have a few more months to go.

Just a word of caution...lyme is very controversial.  The mainstream doctors and infectious disease guru's deny that Chronic Lyme exists and feel it is easy to diagnose with good tests and easy to treat with 2-3 weeks of antibiotics.   This just isn't true and there have been no double blinded studies to show that lyme is eradicated from the body with a short course of antibiotics.

This is why you need an ILADS trained doctor.   You can go to their website and download Dr. Burrascano's treatment guideline.  It is the "bible" of lyme.   Regular doctors will say these aren't symptoms and that it is in your head.

Not saying you have lyme...but it is a common symptom

Check out the documentary Under Our Skin (google it).  There are also clips on youtube.  You can probably rent from your local library.

You can get well!  lymenet is a good resource also.

Cheers

Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol

Symptoms for Bartonella and Babesia (common co-infections with lyme)

Bartonellosis symptoms:

Common symptoms of bartonellosis include:

___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)

___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"

___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature

___Headaches, especially frontal (often confused with sinus) or on top of head

___Eye symptoms including episodes of blurred vision, red eyes, dry eyes

___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)

___Sore throats (recurring)

___Swollen glands, especially neck and under arms

___Anxiety and worry attacks; others perceive as "very anxious"

___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature

___Poor sleep (especially difficulty falling asleep); poor sleep quality

___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)

___Muscle pains especially the calves; may be twitching and cramping also

___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)

___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.

___Tremors and/or muscle twitching

___Heart palpitations and strange chest pains

___Episodes of breathlessness

___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins

___Gastrointestinal symptoms, abdominal pain and acid reflux

___Shin bone pain and tenderness

------------------------------------------------------

Babesiosis


As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Chills

___Fatigue and often excessive sleepiness

___High fever at onset of illness

___Night sweats that are often drenching and profuse

___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)

___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"

___Depression

___Episodes of breathlessness, "air hunger", and/or cough

___Decreased appetite and/or nausea

___Spleen and/or liver enlargement

___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)

___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)

___Joint pain (more common with Lyme and Bartonella)

___anxiety/panic (more common with Bartonella)

___Lymph gland swelling (more common with Bartonella and Lyme)

[Londres70]

Yes, ALS usually present with muscle twitching, but the twitching is usually localized in one area with muscle atrophy and weakness.  Your twitching sounds more like BFS (Benign Faciculation Syndrome).    

You did state you really don't exercise, so the weakness in your legs could just be related to inactivity.  

Please consult a Neurologist to help you sort out what is going on.  

[nellie88]

thank you!!what if the fasciculations are brief yet fine..i cant really see them but i can feel them..I read somewhere tha this is an indicative of as!!is tha true??are fine twitches that cannot be seen but only felt bad?
thank you

[Londres70]

In my opinion, I don't think it is; you just don't fit the profile.  For instance, your twitching is all over and not really localized, plus the twitching stops with movement.  The problem is DEFINITELY Neuro though and should be investigated as soon as possible.  

[nellie88]

thank you so much for your answer..I will see a neuro soon.I just hope it not ALS...
Its indeed very scary as i have read incidents of people acquiring it before the age of 25..
That surely scared me...i pray its not that..
Thank you

[Londres70]

Given your age, I HIGHLY doubt this is ALS.  

I would recommend a Neuro consult for an assessment and testing.  

[nellie88]

Oh i also didnt mention that in the past year i have developed somewhat of a slurred speech..My s's are not clear..I ve read that is the case with bulbar als!
please any input will be helpfull!