Very confused!

I am extremely confused that many people say als does not start with twitching, but when surfing around the forum it seems as if it can start out that way. i am extremely confused because my twitching is very suttle and soft usually with an occasional big one in my tricep or calf. I tend to feel them a lot while laying i bed in the morning and pretty much all day Also with the cramping my cramping is very confined to a small area and almost feels like a charlie horse and the scary part for me is that they have been happening a lot in my neck. Both of these symptoms have never stopped since they started. I know that this is not related to excercise as I have stopped all excercise when symptoms started 6 months ago.

Thanks and God Bless
jfred

Hello jfred,

There are no two pals alike. Symptoms happen differently for all of us. For me, I was two years into als before I noticed twitching, I could have had them sooner, but didn't notice until they were constant. I to get cramps in the neck, although this is infrequent, it can be brought on by simply tilting my head back while taking a drink of water.

jfred ... the confusion comes because many people who participate on this forum do not have ALS, but don't mention that they have not been diagnosed. So discussions in the past have raged on about twitching as well as numbness and other non-ALS symptoms among many forum members, none of whom had ALS. This can be baffling to newcomers, as you have experienced.

After a while on the Forum, you get to know people's medical situation, but I have trouble, too, remembering who actually has ALS and who does not. It helps to check the "Diagnosed" status on the bio.

I hate the thought that this great Forum has contributed to the public's confusion about ALS .... but I'm afraid we have been guilty of contributing to all the misinformation about ALS on the Internet because of all the posts here from people without ALS. When "researching" on the Internet on any medical topic, you have to be very careful. Look for respected medical websites, pay attention to the credentials of the individuals who are posting, etc., and take everything from laymen with a grain of salt. The best advice is always: If you have a health concern, see a doctor! Come to forums like this for emotional support, advice on coping with symptoms and daily living, etc., not for authoritative information on diseases or diagnosing.

Anyway, twitching is a very minor part of ALS, and it usually appears after weakness and atrophy have damaged the muscles. It is not even included in the diagnostic criteria for ALS.

If you have these symptoms for some months and didn't have weakness or atrophy them what you probably have is bfs (benign fasciculation syndrome). If you are too afraid go to the doctor and ask him about a test called emg. If this test comes back negative so bfs is a great possibility. I have been suffering from twitching, cramps and pain for almost three years now and the only thing they told me is that it is benign. There are another forum about bfs: www.aboutbfs.com. I make some things that relief my symptoms. If you like to know what is please send me a private message.

God stay with you.

Thanks nightwolf, I have been to neuro andhad a normal upper emg on march 23, but i feel as if things are progressing and the cramping is getting worse along with some joint pain the past couple weeks. anyway i dont really know how to send a private message but hope to be in touch about bfs.

Thanks and God bless
jfred