Status
Not open for further replies.

helpseeker

New member
Joined
Jun 7, 2018
Messages
7
Reason
Learn about ALS
Country
CA
State
canada
City
ontario
first of all thank you all for allowing us to ask you questions about a serious disease that has affected you. very appreciated

my questions, and i am very concerned:
a very close person, whose mother has been diagnosed with frontotemporal dementia (at age 71,) is suffering from acute onset of generalized fasciculations (not constant), sensations of heavy legs and stiffness at some extremities as well as sensation of difficulties swallowing for two weeks . age: around 40ies
has had these symptoms 20 years ago, then it was ongoing for a year.

anyone of you experienced with ALS, are there similarities?
if you would ignore that episode 20 yrs ago, any probability of ALS ?
thanks a lot
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,902
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Those symptoms don’t jump out as ALS certainly. Twitches are non specific and sensations are not the way ALS starts especially in multiple areas. The person should be evaluated by their doctor and it is worth mentioning the family history especially so if there are other cases of neurodegenerative diseases in the same bloodline
 

helpseeker

New member
Joined
Jun 7, 2018
Messages
7
Reason
Learn about ALS
Country
CA
State
canada
City
ontario
You mean generalised fasciculations all over the body changing position are not indicative of als?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,902
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Correct. They mean nothing and are usually benign. Did you read the important post read before posting at the top of this subforum?
 

helpseeker

New member
Joined
Jun 7, 2018
Messages
7
Reason
Learn about ALS
Country
CA
State
canada
City
ontario
Yes I read the general posts. I know you write in the general posts that these symptoms do not mean anything. if you however go into medical literature and peer reviewed journals/studies, you will find exactly these symptoms as being indicative for als. That's why I wanted to ask ppl who have own experience with this and can shed light from a different perspective than medics.
There are case reports where generalised fasciculations are described as first symptoms of als patients . and symptomps i wrote about sound like 2nd motoneuron affection. But reading about fasciculations is so different than knowing what these really mean
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,902
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Those posts were written by people with ALS. You can find case reports of practically anything but I stand by my statement that twitching is usually benign. Has it EVER hsppened in ALS? Yes. Is it indicative? No. That is ehy they write case repirts- because it is so atypical it warrants mention. You can find FAR more reports and anecdotes of those symptoms being consistent with BFS than ALS. However I told you that the person needs to see a doctor especially given the mother’s FTD. I am not going to argue with you further
 
Last edited:

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,456
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
The peer-reviewed literature to which you refer does not say anything like "whenever there are fascics, ALS is present." In medicine, much attention is paid to the timing of symptoms, their duration and how much they overlap. So when we say in the stickies that fascics in and of themselves are not diagnostic, this is in accord with the publications and guidelines you will see.

Best,
Laurie
 

helpseeker

New member
Joined
Jun 7, 2018
Messages
7
Reason
Learn about ALS
Country
CA
State
canada
City
ontario
thanks, absolutely agree

these kinds of reports are what make the "twitchers" panic, not only Dr. google:

Cramps, muscle pain, and fasciculations | Neurology

quoting: "ALS is often characterized by a phase of
fasciculations and muscle cramp before the onset of
symptomatic weakness and atrophy"
and "The pathogenesis of “benign cramp-fasciculation” syndrome is unknown, but there may be more to learn
about the underlying relationship of the neurophysiologic
abnormality in this syndrome and the earliest
phase of MND"
 

helpseeker

New member
Joined
Jun 7, 2018
Messages
7
Reason
Learn about ALS
Country
CA
State
canada
City
ontario
Are nocturnal myoclonias (jerks) a typical symptom of ALS?
Repetitive specially First Phase of Sleep?
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,456
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
1) The paper you linked to is a single case report from 2004. In fact, the authors cannot rule out the possibility that BFS preceded ALS. Case reports are often case reports precisely because they are outside the norm. So it's only as impressive as you take it to be. We are not here to armchair-quarterback past anomalies, but to reflect a much larger dataset among our members here.

2) If "myoclonias" are predominant or exclusively at night, I would think of RLS or a related sleep disorder first. In ALS, the nerves die -- they don't misfire at certain times of day.

Your friend's mother should ask these questions to her physician in the context of her complete personal and family history. I don't think we will be helpful as a substitute for that, esp. given the complexity involved in her case.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,076
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Helpseeker- are you asking this on behalf of your friends mother or your friend? It's unclear who is experiencing the symptoms you are asking about.

Is there a reason you are not asking these questions to a doctor? It sounds as though this is a worry to your friend- perhaps a visit to the doctor is in order so they can be examined and a health history taken. Any information gained here is third hand and does not incorporate medical history or first person communication.
 

helpseeker

New member
Joined
Jun 7, 2018
Messages
7
Reason
Learn about ALS
Country
CA
State
canada
City
ontario
The symptoms described are in a friend whose mothet was diagnosed with FTD recently. His mother does not have any of these symptoms. No other known family members with eitherFTD or ALS.
Of course a neurologists opinion should be sought
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,902
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
We just addressed that thread https://www.alsforums.com/forum/do-i-have-als-als/41435-als-concerns-2.html#post440568

To summarize fasciculations before atrophy is utterly different than fasciculations before weakness, many repliying did not have ALS, the PALS responding did not comment on the weakness part and the CALS report was second hand and the PALS in that case had had dementia.

We are here to offer advice to worried folk and suggestions for direction. We are not here to argue endlessly.

The person should see a doctor and have an exam. All here including you agree. I am closing this thread. If the person has an exam and there are relevant findings please report back only then
 
Status
Not open for further replies.
Top