Time between twitching starts & other symptoms

[Antologia]

I'm wondering, most people with ALS say that when the twitching starts, there are already other symptoms. However, sometimes I read a story about ALS where someone experiences twitching for about 2-4 years and after that the other symptoms start.

So my questions are:

-if you did experience twitching (and muscle cramps) BEFORE you noticed function loss, how long before was that? (how many years or months)
-did the twitching start in one body-part or did you have it all over your body from the start?

Thanks for taking the time to read my post and answer my questions, as I know you all have a lot other things on your mind being diagnosed...

(Reason of my question: twitching started in may 2013, cramps started last week, feeling of weakness and heavy arms/legs/tongue are there for many years now, but no function-loss at this moment so my doctor won't let me go to the hospital for more tests, she says to wait and see for a while, which is driving me crazy)

 

[Tokahfang]

I think anyone can understand why it would be frustrating being told to wait and see. Patience can be a very, very hard thing. Patience if you're anxious is even harder.

Polls like this, however, are not a good idea. They make what is rare seem merely uncommon, not just for the current generation of forum readers, but for the anxious people of several years from now. Patient memories are a terrible way of distinguishing between people who had a benign condition and then developed ALS and those whom you actually seem to want to hear from. There is a reason for the cliched "the plural of anecdote is not data".

They also run into problems with how back searchers work. They find a few posts that say something like "I had BFS, was told I was ok, had a clean EMG, and now I have ALS!", and they take that as gospel. What their search doesn't find is the retraction 6 months later (oops, it was Isaac's) or any other context. So we have to be careful what we post.

You are living with cramps and fatigue. Those are real things to be living with, and I would encourage you to concentrate on living in that situation abundantly, here in the present. Living in the future doesn't work, and predicting it doesn't work well either. Your doc will know if you need more testing at some point, that is her job. Your job is living as the most awesome Antologia you can be right now.

 

[Antologia]

I understand what you mean. However, I can not be responsible for those forumreaders... I do try to live as best as I can, but I still wonder how long I must wait until I can be sure this is nothing serious or until I can ask my doctor for more tests. Some websites say 1 year, others say 4-5 years (which is a very long time!).

It's hard to live on, not knowing if you are suffering something serious or not, when you feel those twitches/spasms every few minutes, a whole day long.... It reminds me something might be wrong all the time