al or quadbliss can you help me.

[eddy]

Hello guys,

I have read here for about a month, and just finaly decided to post. I really need some help. I am not diagnosed but have seen a neurologist who decided that I had a normal exam and sent be home with mostly info about benign fasciculation symdrome. My basic problem is that both my calves twitch, but mostly my left. I hate to be such a cry baby about this, as some of you all are fighting much larger problems.

I am scheduled for an EMG next thursday and I am really scared that I might have ALS. My basic questions until then revolve around fasciculations turning into something nasty. I know from reading that Al and I think quad bliss started with twitching. I was wondering what happened next as I have been twitching for a little more then 3 months.

I am not so scared of dying, as my soul is right with God, but I am afraid of the process. How do you scratch an itch, how long can you turn over in bed, how do you go poop. I have so many questions, but am afraid to ask as you all deal with this in what seems to be such a positive way.

If some of you would be so kind, just answer the itch, turning and pooping questions I would be eternally grateful.

Ed

 

[ChrissyWho]

Hi Ed,
To answer your question about itching, turning and pooping. Your loved ones/caregivers help you with it. We do it out of love. Try not to worry.

Chris

 

[Jamiet]

Eddy,

After 3 months of twitching, do you have any other problmes besides twitching?

If you don't, its most likely BFS. If it were ALS or MND of some sort, usually, 3 months into twitching, you would notice something was wrong. YOu would be having some type of muscular issues, cramps, fatigue, weakness, loss of stamina or somethign close to that.

rgds,

Jamie

 

[Al]

Jamie has it about right. I had the twitching but did not realise the weakness was being caused by the same thing.
AL.

 

[CindyM]

Hi Eddy-your concerns are perfectly natural. It is scary to rely on caregivers when you're strongly independent! That said I'd like to reassure you that you may not need to worry about that stage for a long time yet. I started twitching a year ago, and didn't lose muscle until about about 8 or 9 months later. Even then I have only lost one muscle that can't be explained. The ALS clinic stuck an emg needle right in that muscle and the test came out clean! My right hand was "dirty" but I have a bad ulnar nerve on that elbow so we are thinking that explains the right hand.

A lot of folks go months without a clear DX of something, and many more learn that they have some sort of condition that is treatable. So keep researching, hang in and learn all you can, and with luck you'll end up treatable or unexplained but not getting worse. I'm praying for you that it will be either one of these 2 scenarios. Cindy