Akka, I think if there were a standard set of symptoms, then ALS would be very much easier to diagnose.
If you google ALS, you will see the initial symptoms are usually cited as weakness (without pain) in one limb - tripping or falling, loss of dexterity in the hands (dropping things), difficulty with speech (slurring) or with swallowing etc. The list goes on.
However, if you spend some time here you will see that there are many PALs whose initial symptom were not typical at all. In fact, it would appear that many PALs are initially misdiagnosed. There are people on here who starting with twitching, some with pain and many other things.
I wouldn't try to second guess. If you are concerned about symptoms you are having, ask a doc for advice.
Seems many want to know the symptoms that were present before a DX was made. Here for any interest, I have listed Rick's in order of their happening. Sleep apnea. Staggering on uneven ground or grass or gravel. Excessive morning fluid in his nose. Weakness in getting up from a low chair or toilet. Difficulty getting out of the car without using his arms. Noticable loss of muscle in his right calf. At this point we brought these things to the attention of a neurologist at the VA. They did tests, including blood tests and an EMG, along with reflex testing, and physical dexterity tests. The blood test showed an abnormal CK level. The EMG was not normal in some aspects. The reflex tests were either too much reaction or not enough. At first it was a tentative DX for ALS> Recently Rick has begun to have twitches in the evening....in his legs. He has never had slurred speech, difficulty swallowing, or pain. No pain anywhere at anytime. .... but if he laughs, say at a good joke, he ends up coughing to catch his breath. He requires more sleep lately, but we suspect he needs to change from a Cpap to a BIpap. There have been glitches in his memory, but only occasionally. He doesn't remember seeing the cat pictures that were prominent in the VA hospital corridor.... and he just loves cats. We went back a second time and saw them again. He doesn't remember seeing them either the first or the second time. He is active and lives a normal life. The casual observer wouldn't know he has ALS or anything wrong. He is now doing corporate income tax returns again this year and is as sharp as a tack on that! Hope this helps someone to know that all symptoms don't occur in all people, nor at the same time. Progression is individual. Rick and I love you all and wish all the best of life to you. Oh, it has been about five years since the first onset of any symptoms... and he has only known it is likely ALS for 4 months. Marjorie
(My brother Tim had Cramping & Twitching for 7 years before DX in March 2005. Please keep in mind everybody is different.)
Initial Symptoms of the Disease:
At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:
muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
impairment of the use of the arms and legs
"thick speech" and difficulty in projecting the voice
in more advanced stages, shortness of breath, difficulty in breathing and swallowing
The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. But, progressive muscle weakness and paralysis are universally experienced.
Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.
The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.
As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive.
Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected.
Shiver and tremblings in spine, in back, like something is going on in spine, cold sensations, shiver in all body, like flesh or some parts are pulsating, weakness and fatigue, dried and weak hands, needles in hands at night, rare fasciculations, might be ALS simptoms? Only als, or also something else?
Reading on this forum I see that they are so many neurological diseases, except als, and that the symptoms are not very clear for one or another. Unfortunately I am in a country where medecine is 200 years back, and I can not have proper tests here, I don't know where to go to have a proper investigation. Could anyone advice me a clinic in Europe or anywhere elso to try to contact them and go have some modern tests?