Did anyone have Fasciculations before Atrophy?

[robc]

ok.. So here's a follow-up question for those that had twitches before atrophy.

How many had emgs without fibrilation potentials at the onset of fasciculations?
How long between visible fasciculations and ENG with fibrilation potentials?

Thanks !

-Rob

 

[guwainengle]

Rob-

I can say I had at least 3 months of fasciculations with a normal EMG coming back after a very thorough exam. It has been a few months after that test and my cramping and twitching has gotton worse and am awaiting another in3 weeks to have a follow-up EMG. I have no atrophy that my wife sees but I can tell a difference in my left side-- arm and leg. And have no diagnosis other than BFS. I have a very good friend who had fasciculations for at least 16 months with 6 different EMG's in Pittsburghand Altoona at a very respected Neuro-science hospital-- After all the false hope during that time of twitching and sleepless nights on his 7th EMG they found abnormalities- even though he had no atrophy. When he returend for discussion there was a nurse the Neuro and a social worker there-- He knew he had bad news that day. Alot has to be said about who does the EMG and how many sticks and are they in the correct muscle. Also this friend even said over the time they were doing the sticks during a fasciculation in that muscle and nothing till the 7th one made it abnormal. It was definate positive sharp wave fibrulations. Interesting enough-- he said that the sound on the EMG machine did not make the clacking/popping noise duing the exam. If it did he did not notice it. I am curious to see how others answer this great question.

G

 

[megs]

Al, others: What? From all literature I have read fasciculations always come after weakness/atrophy. I dont understand Some neuros wrote on their web it has to be this way since fascics are caused by reinnerving damaged muscle.
The next explanation I read was, that the people didnt notice weakness that was already present. Possible..?
I really dont know

My personal question: Did any one have fascisc as a very first sign? I know its rare but I would like to know...Only twitching for months? No weakness, no motoric disorders..only twitching:

My Dad .[the very handsome man to your left :wink: ] Started off with the muscle twitching in the upper arms .......he had no weakness for probably the first 5 months of the disease , just twitching ..........then he developed the frontal lobe demtia as soon as the weakness arrived .........From experience do you know how many people develop the Frontal Lobe Dementia in conjunction with ALS ? ...........My Dads neurologist said the 2 were connected , but hadn't seen many cases .....talk about a double whammy

 

[guwainengle]

Megs--

I wish I looked that good at 43. Sorry to hear about the double-wammy. To answer your question on FTD. I have seen on other posts that there is a corolation between these two diseases. It seems to not be coincidental. May I ask about the type of twitching? Was it fasciculations of the muscle- or arm jerking and twitching. Did it seem continuous or sporatic. And random or isolated? Also what was the first noticable weakness that he observed? And was there atrophy present? I know alot of questions... But I am sure others may want to know also--

Thanks G

 

[megs]

Megs--

I wish I looked that good at 43. Sorry to hear about the double-wammy. To answer your question on FTD. I have seen on other posts that there is a corolation between these two diseases. It seems to not be coincidental. May I ask about the type of twitching? Was it fasciculations of the muscle- or arm jerking and twitching. Did it seem continuous or sporatic. And random or isolated? Also what was the first noticable weakness that he observed? And was there atrophy present? I know alot of questions... But I am sure others may want to know also--

Thanks G

Hi Guwainengle

That pic was taken just before diagnosis when he was 63 , he was a super fit man who was very fastidious about having good health ....

It started with fasciculations of the muscle............it was continuous ..........started in his upper arms , then his stomach ..............The first noticible weakness came in his hands , He used to play A grade tennis every Saturday , he could no longer hold the Raquet with a firm grip

The Atrophy came after the weakness started in his hands .........fasiculations -----> hand weakness----------> atrophy of upper limbs ----------> Dementia ----------> loss of weight

He died with his breathing still over 70%.............

 

[linken]

My ex had ALS and I have sympthomes too, but not any diagnosis yet. I think we got it from pesticides.

 

[Saubier]

I have had hardly any fasciculations, and what I have had haven't bothered me much, but I do have significant atrophy in my hands.

 

[APC]

Fasics

I just came upon this post. My husband started with the fasics in the upper arms. % mos later we noticed speech changes. Then the weakness started in the legs and arms. Dx PLS going to ALS eventually. So the dr. thinks. It was a year in the maiking for the diagnosed. We still believe in the power of prayer. I pray daily for him. He's always been a very handy man around the house. Now he's unable to do the things he loves.

 

[Tall John]

Pull up my other posts

I discuss my onset elsewhere

 

[4rhl1981]

It pretty funny that most diseases cause anxiety, and anxiety cause every symptom out there! I'm starting to think anxiety is a blow off line, every time I go to the VA no matter what it is for its anxiety. Trouble swallowing= anxiety, muscle twitches = anxiety, chest pain= anxiety, GRFD = anxiety, acne = anxiety, back pain= anxiety. I am surprised when I was bleeding internal, from being injured in Iraq they didn't say that was anxiety too, but they did say I had PTSD which is a type of anxiety, ha ha. Sorry just venting. This is by no mean directed toward anyone it just my frustration with the VA coming out. Sorry again.

 

[dona jean]

i have been having fasciculations in my arms for quite some time. before i was diagnosed with als in october 07 i was having them in my legs and tourso as well.
i still have fasciculations all over my body, and my legs are progressively getting weaker, as well as my arms and hands. the doc says the fasciculations will never go away, so i just live with them...just like the disease...it is what it is. hang in there and
do like the rest of us and go day by day and be thankful for what we have! peace.

 

[bart1]

Is this true/possible?

Rob-

I have a very good friend who had fasciculations for at least 16 months with 6 different EMG's in Pittsburghand Altoona at a very respected Neuro-science hospital-- After all the false hope during that time of twitching and sleepless nights on his 7th EMG they found abnormalities- even though he had no atrophy. When he returend for discussion there was a nurse the Neuro and a social worker there-- He knew he had bad news that day. Alot has to be said about who does the EMG and how many sticks and are they in the correct muscle. Also this friend even said over the time they were doing the sticks during a fasciculation in that muscle and nothing till the 7th one made it abnormal. It was definate positive sharp wave fibrulations. Interesting enough-- he said that the sound on the EMG machine did not make the clacking/popping noise duing the exam. If it did he did not notice it. I am curious to see how others answer this great question.

G

As I understand this correctly, a friend of guwainengle has 16 months of twitching, 6 clean emg's - 7 abnormal and diagnosed ALS? ? Is this possible?
I don't even understand why he had 6 emg's done over 16 months if that was his only complaint? Anyone?

 

[hopingforcure]

Q himself thought he had als, he went to my same doc. first thing my doc said NO als. He did a emg clean.. He did another emg about 6 months later... clean. q never even stopped by again, he was fine. So take the friend thing for what it is worth..

 

[BLPhill]

I had fasciculations long before the atrophy.

 

[BethU]

As to FTD (fronto-temporal dementia) and ALS, Megs asked:

From experience do you know how many people develop the Frontal Lobe Dementia in conjunction with ALS ? ...........My Dads neurologist said the 2 were connected , but hadn't seen many cases .....talk about a double whammy

I can't speak "from experience" only from online reading, but I believe that about 25% of ALS patients have FTD also. (Don't rely on my faulty memory ... there are lots of legit places online to get the exact figures.) I have also read that where there is overlap, often the FTD starts first.

FTD is not like Alzheimers. Symptoms can be language difficulties (word recall, not recognizing written words, etc.) or behavioral (lack of "social appropriateness"). Depends on which side of the brain it's on. Like early ALS symptoms, early FTD symptoms can be very subtle too. Who doesn't forget names or words as they get older?

As you all compare second-hand reports of twitching/atrophy/weakness, please pay attention to whether the responses are from patients who have been diagnosed with ALS. There is a ton of misinformation on this forum, as well as elsewhere, from people WITHOUT ALS posting their symptoms and confusing other undiagnosed people.

The weakness in ALS is so insidious, you can lose a lot of strength without being aware of it, as adjacent muscle neurons (fibers? ... sorry don't know a thing about medicine, only a little about ALS ) carry the load as long as possible.