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Do I have ALS?
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by jamy898, Sep 02, 2010
I am 24 and I am worried that I might have ALS. My symptoms begun 3 months ago. It started with tingling radiating to my hands, neck, head and lower legs. After a couple of days the tingling has turned to burning. Since than everything has subsided and I am constantly experiencing tingling and burning sensation in my arms.

Over the last month and a half i started to experience twitching. all over the body. The twitching now has become constant. I experience it 24/7 (mostly legs and arms). The twitching is internal and external (i can see that). I also experience constant buzzing in my feet. Also every muscle in my body starts to shake with the smallest effort (for example when i lift my leg when lying down, it starts to shake)...i don't feel tired but it is just shaking... is this an indication of muscle weakness?


In the last two weeks i started experince twitching in my face (spiderweb feeling). Whats weird though is that when i wrinkle my nose (flex the face muscles) I start experience tremor like twitching in the muscle around my eyes and nose. That tremor stops once I relax the facial muscles. Lastly, at the same time when the face twitches started, my tongue got numb. Just the tip. I can still sense some feeling but the texture feels different, and there is a bitter feeling taste when i rub my tonuge against the oral cavity.

My neuro appointment is in 2 months. reading about my signs and symptoms has made me feel stressed and anxious at times, and the waiting is driving me insane.

I would like to know if anyone experience the same symptoms or has anything to contribute.
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Member Comments (11)
Avatar_m_tn
by stmnm, Sep 02, 2010
hallo
first thing take a deep breath and relax

now
i dont know way it takes 2 monthes to see you doctor and if you can make it sooner or go to other doctor that can see you sooner.

if you will check my post you will understand that i have allmost any syndrom or dessise in the world bu no one can find what is the real one
so for you i think it is better now to act for seeing a doctor as soon as you can and do not think and tag yourself with ALS
ALS is a very hard thing and there are allot of tests that you need to do before even if it is ALS someone will know it for sure
relax and try to think positve.
i am not a doctor but i know allot about ALS,MS,DYSTONIA and on......
every symptom that you have can be allot of other things and not only ALS so the chances are not big as you think.
every neurological situation is allso efected by stress and way of life, every one of them can be harder if you do not relax.
so please remember you are not alone and many peoples in the world are in the same situation as you right now
feel free to be afraid but remember that it is only fear and this thing can be controled only by you.
give a big smile and breath deep so you can keep hanging on and fight till you know.
have a great day for now :-)
Avatar_m_tn
by bcb1200, Sep 02, 2010
You should consider lyme disease.  many people are misdiagnosed with ALS and it is really lyme.  You can get well with proper diagnosis and treatment.  Here is a message I posted earlier to someone.

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)
Avatar_n_tn
by jamy898, Sep 02, 2010
Tnx for the support guys. I live in Canada, and having a specialist appointment takes time. Thats why it takes me 2 months to see a neurologist. and i cant imagine the amount of time its going to take for EMGs and MRIs...its going to be a long ride of worrying. I will try to keep my mind busy with other stuff


and i will consider Lyme disease too. What kind of test do i do for that? is that a simple blood test or does it also require a specialist?
Avatar_m_tn
by bcb1200, Sep 03, 2010
You need a blood test called a Western Blot from IGENEX (a Lab in the USA).  All other lyme tests are not reliable.  They are falsely negative more than 50% of the time.  I originally was negative on the "standard" test, but came up highly positive on IGENEX.

www.igenex.com
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by Shortyrock, Sep 04, 2010
Hey, How are you feeling? I'm Jeff...I'm 28
Where in Canada are you from?
I'm in the Toronto area...
I have been experiencing a lot of the same symptoms you are...but I'm getting nothing but normal test results...and believe me I've had PLENTY of tests!

Tests I've had- 3 Spine MRI's
                     - 3 Brain MRI's
                     - 4 EMG's
                     - 4 Nerve conduction tests
                     - Spinal tap
                     - Chest CT scan
                     - Abdominal CT scan
                     - Upper GI Endoscopy
                     -Chest X-rays
                      -ECG's
                      - Tons of bloodwork.. Including STD tests..Elisa for Lyme...CK..not one
                         thing is abnormal....

I've been seen by a number of teams of neurologists and thus far I'm without answers, I'm waiting for an appointment to be made for a muscle biopsy...but that might not be for another month...so I'm stuck trying to wait it out just like you...how did your symptoms start? And how has it progressed in the last 3 months?

Respond or message me when you can

Stay positive!

Jeff
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by jamy898, Sep 04, 2010
Hey

I am glad that your test results are normal. How did u manage to see so many neurologist. I am going to see one in a month and a half. Really worried.
My symptoms started with tingling that turned into a burning sensation (like a sunburn)...read my 1st post.

In the last couple of days i got a new symptom. The soles of me feet hurt when i step on them. Mostly the left leg. I also feel some numbness there. Also i get random cold sensations on my skin... feels exactly like a drop of water is touching me. When i am outside i think its raining... happens a couple of time daily.


On the good side, the twitching has subsided.

I am from Toronto as well....Scarborough.
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by Shortyrock, Sep 05, 2010
I'm from Scarborough too..Warden and Sheppard!

I was admitted to Scarborough Grace initially...I was there for a week in June...then I was released with no answers and I got worse...so in July I went to the ER @ Sunnybrook hospital...So I follow up with a neuro team @ Sunnybrook...Also my family doctor referred me to a neurologist downtown @ Toronto General...Who is the Neurologist you are going to? Is it in Scarborough?

I'd love to help you out if I can...It's hard not knowing what's causing this...I'm having a nerve and muscle biopsy done soon...that should be helpful

I get the feet thing too...but it comes and goes...no numbness though...I also get the weird feelings on my legs but for me it feels like warm water...and that tip of the tongue thing..I get something similar...i get burning in the tip of my tongue...

Stay strong till your appointment....but if you feel like it's getting worse..don't hesitate to go to the ER...sometimes it can speed up the process and you can tests done quicker...Don't go to a Scarborough hospital though ...trust me...go downtown to a university affiliated hospital.. St.Mikes or Toronto General or Toronto Western or Even where I went @ Sunnybrook...those hospitals have some of the best Neuro departments in the country.

Message me anytime if you need help or advice...in the past few months I've been through LOTS! ...

make sure you keep in touch...

Jeff
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by jamy898, Sep 05, 2010
I was at the ER 3 times. I feel really stupid for going there though. The first time the dr said that it may be the body wash that i am using, the second said thats it maybe be the thyroid and the third said that these are non specific symptoms. So no one got me to see a nuro. So i have no way to speed things up. Where did u get the EMG done? how long did u wait for it
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by Shortyrock, Sep 06, 2010
Never feel stupid..I went to 5 different ER's in the GTA... Nobody would admit me at first...they looked at me like I was going mad! Then one day when it was real bad...I called an ambulance and that took me to Scarborough Grace...they admitted me..I saw a Neurologist the next day..I had an MRI on my brain and spine the day after...and about 3 days later I had my first EMG and Nerve conduction test....
The Neurologist that I saw was on Finch near Warden...he was HORRIBLE...he didn't care at all about what was happening to me,,once the tests were normal he actually told me that he didn't think we were gonna find the problem and then he got up and left!

What is your Neurologists name??
And when's the appointment? Did your family doctor refer you? Any change in how you're feeling?