My story so far, does this sound like ALS?

[goolia75]

That's a great quote, Teresa, and one that people should ask themselves each and every time they worry about ALS. The BFS site is really helpful huh? I also think it's good that you are here trying to help others overcome their fears.

 

[Antologia]

Thanks for all the reply's. I do hope you all are right about bfs. I'm not convinced, that is because I have spasms as well. So not only twitching, sometimes I have my whole arm or leg moving in a second. Also I have some weakness since the beginning and I have read some stories with people who describe the same as my experience. I can't find anything about the spasms when I read about BFS. They only talk about cramps, twitching, feeling of weakness. But I do experience a heavy feeling in arms and legs, something I read about in stories of ALS. I aslo have salivaiton, when I'm speaking I can't swallow it quickly enough, because it's to much, not because I can't swallow.

Well, I have a doctorsappointment (again) next tuesday and I hope she will send me to a neuro now.

 

[TeresaElizabeth]

From what I understand people don't have more saliva they just aren't able to swallow... Period. And spasms and whole body part jerks are VERY common in BFS. I'm glad you made an appointment with your dr. And getting referred is a good idea. There are so many other things that can cause your symptoms...

 

[Antologia]

So, went back to the doctor this morning and this time she said it was good for me to come back, since the twitching didn't stop. She send me to the neuro, I can go there on November the 5th. So now wait until then...

 

[Antologia]

So, yesterday I had an operation on my right knee. After the operation they paralysed the nerve in mijn leg, so I wouldn't feel the pain. Today I started to strech my leg, as the fysio told me to. And since then, the muscle in my knee is non-stop twitching. I'm going crazy! I have twitches now for 6 months, but they were always at different places and last for a few seconds at one spot and then go to another. But now it the whole day at this one spot, my knee. Also other spots, but thats the "normal" way, a few seconds and then move to another spot. It's so frustrating! I don't want to thinks about it, but because of this constant twitching I do all the time and I don't know if I should be doing the exercise the fysio told me, as the twitching is getting much worse then

Just wanted to tell... Go to the neuro in 10 days, but that doesn't help me now

 

[Antologia]

So, went to the neuro today. The reflex-test were all okay, nothing stranged noticed. Twitching was in a big muscle the neuro said, according to him this is mostly common in bfs. But, to be sure he will do an EMG and bloodtest CK. After that, a follow up appointment to talk about the results. He did not think of ALS, because he didn't found anything strange in the reflextest.

So, now wait untill the EMG appointment and the bloodtest...

 

[vickim]

Well that is good news. I hope you are seeing it that way.

 

[Clearwater AL]

Again, too many medical web sites state (usually in the first paragraph) "There is no single definitive test to diagnose ALS." Then you'll read in Forums where someone was diagnosed with ALS from the results of a single test. For many people it becomes very hard to let go of that common statement in the first paragraph of most reliable medical web sites. I think your neurologist saw other things besides your reflex test to begin your 1st neuro exam with "I don't think you have ALS." Anyone would hope that you don't have ALS. But, be patient, you've got some testing process to go through to find your peace of mind. Find more patience if you feel the need for a 2nd opinion. Most of all... patience is a must.