How long?

[Nikki J]

Did it take you to type your last post here? And how did you do it?

I realize this sounds off topic but my (forlorn?) hope is that some of our visitors might stop and think twice before posting repeatedly and also value more the replies if they realize what an effort it is for PALS.

I do not have ALS I typed this on a keyboard in a couple of minutes.
My sister has ALS no hand function no voice. The first 2 paragraphs would have taken her a hour with her eye gaze which she finds very difficult and tiring.

Just please think before you post repeatedly

Thanks
Nikki

 

[Nighthawk]

I think I am guilty myself, Nikki J.

We, as a whole, are spending, lots of time, energy, etc. by addressing a true flock of posts from people asking if they have ALS just because they "twitch", or have sinusitis, or were weightlifting and ended up "twitching".

We are encouraging that "twitchers" behavior and, I've been told by some "old timers" forum members that they are no longer logging in onto the forum because of this thing is putting them away.

I am not saying that we should stop addressing their concerns ("twitchers") but we should focus on helping even more other PALS who are in WORSE SHAPE than some of us who can still talk, walk, type, laugh, etc.

To answer your question, Nikki J, it takes me an average of 5-7 minutes to type a two to tree paragraphs post. I use an iPad. My left hand (I'm lefty) is 100% atrophied and the right hand is about 30% atrophied.
There may be other PALS in better shape than myself and may take less than that but, well, such is life.


I hope to have answered your question.


NH

 

[ottawa girl]

NH - same here. Left hand is very gimpy. Right is so so, but not too strong. I can still drink a glass of wine! I type better now with my iPad then I did with a keyboard. Don't know why I waited so long to buy one. Really liking it. Will like it more after my tutorial.

Nikki - the DIHALS are mostly scared. I don't mind answering, once, twice - but the third time is when they're not listening, and I may get a tad stupid. But, that's a choice I make. I suppose when the day comes that it's too tedious. I'll stop. You sound like a great sister!

 

[Nikki J]

Hi guys
I did not mean to offend you PALS! Just trying in my clumsy way to make a point. Elaine I get that they are scared. I am scared too. I come from a FALS family I have the gene and I have up to a 94 percent chance of getting ALS. But some of these people cross the line. You are so kind and patient with them. God bless you!

Again I am sorry the point I wanted to make was to the DIHALS people so they might realize what an effort it is for you all. When we read a post it is so hard to envision what a struggle it might be for the poster. I know ALS in all its evil stages and it is hard for me to remember that you all can not tap out a response like I can!

Love
Nikki

 

[vickim]

I don't think you have anything to be sorry about. I am not a PALS, but like Elaine I will answer and try to help two or thee times but if they keep coming up with more questions even though we are not drs and give our opinion then I stop answering them. It gets frustrating typing the same answers over and over and I can type, can't spell but that's a different story.

Nikki everyone knows you are trying to help.{{{{HUGS}}}}

 

[ottawa girl]

My dear Nikki - nothing to be sorry for! No offence whatsoever.

You are right, some DIHALS do cross the line and some are trolls. Many are repeat offenders using new names. Often their writing style, spelling errors, cut & paste techniques are downright obvious. My body may be falling apart, but my memory is just fine. Ha! Ha!

I did note your FALS connection. That's a big one! I seriously don't know how families get through it. So many losses. And so many worries.

 

[Nighthawk]

@ Nikki J:

Thanks for clarifying to whom your original post was addressed at.
I got it now.

"Twitchers" don't take long to post a 15-20 paragraphs post because they do not have weakness and atrophy.
They are mostly reassured by many of us here (PALS and even CALS) that based on their described "symptoms" they do not have ALS. However, they keep going, and going, and...going.

They ignore their Doctors.

They even refuse to see a GP and want to twist our arms to get a diagnosis.

There is one of these threads that, if I were a Moderator, I've closed it right away.
The one I'm referring to was started in March (nearly three months ago), and, its starter tries to keep the thread alive by posting occasionally even when he has been reassured his symptoms are not likely to be ALS.
I think that is a blatant DISRESPECT to us, who can barely type.

There was even another of those folks who asked 3 YEARS ago, if he had "Bulbar ALS", he was reassured by respectable forum members at that time (some of these members passed away already) that he didn't have anything like that.
However, exactly 3 years later, he opened another thread asking the same question. ("!").

Are they really being serious or are they really testing our patience, what is it what they want?


I agree with a user named "LornaM" (who no longer posts here) that the DIHALS Forum is an
invite to everyone with a twitch and serves little purpose as no-one here can diagnose anyone asking the question.


Let's see if they can read and understand that we PALS can barely type and start showing more understanding toward those of us who try to reply them.


NH

 

[olly]

My problem with typing is smaller in comparison to pals with me having pls........
My hands/fingers are stiff with spasms and i have fine motor problems/ataxia so type with one finger slowly.....cognitive function not too good also.

I spent so many years and hours on this part of the forum ......hours convincing and calming hysterical individual ones.
After a few years you get a sixth sense as to who have a genuine problem or who are obsesive stressed hyperchondriacs.
I do agree that repeat offenders who will not listen to reason should be ignored.

12 minutes to write.....well,its late here and i'm tired

 

[Nighthawk]

@Olly,

Wow!
Did you mean 12 minutes to type this post you just posted?

"Twitchers" should be more compassionate, kind and unselfish towards us, PALS who are making a very big effort to address their questions and concerns.
We are in the twilight of our lives and we are doing the best we can to the extent possible to help. We shouldn't be pushed to the limit. I hope many newbies can read this thread and try to understand us a little better.

*Firstly, before even starting a thread, read all the stickies. Every one of them. Re-read them if necessary or if you didn't understand them very well (although, they have been written in terms of layman so should be easily understood).

*Secondly, if the stickies didn't answer your questions (they should have), try summarizing what you are feeling and what you have. Please, please, not lengthly posts. Do NOT try to make the mistake of diagnosing yourself as you are not a Doctor or a Neuroigist.

*Thirdly, remember that the people you are asking questions to on your posts are not Doctors, nor Neurologists, nor GPs or ENTs. We are just common folks with not background on Medical Science whatsoever. We are just patients who were diagnosed by experts on the field of Neuromuscular diseases. And, we can hardly type (between 7-12 minutes typing a 5 sentences post).

*Fourth, if you have an upcoming Doctor's appointment (within weeks, or a month), just be patient and wait for your appointment). Any disease you might think you have is not going to progress so quickly in a matter of just weeks.

*Fifth, after seeing your GP or ENT, wait for a referral to see a Neuro. They will surely issue a referral if they deem that your symptoms warrant it.

*Sixth, once at the Neuro's office, ask ask as many questions as you can. Be forthcoming. It's your insurance who is paying that Physician's wages so you have the right to ask as many questions as you have in mind for your own peace of mind.

*Seventh, if procedures such as EMGs are performed at your Neuro's office, discuss them thoroughly with him/her what the EMG results mean for you.

*Eighth, if your EMG came up clean, you surely do not have ALS or any other MND for that matter. Clean EMG means that not harmful process is occurring with your motor neurons.
Even if you see twitches in your body with a clean EMG, those twitches are mostly benign or might be caused by a mineral/vitamin deficiency. So check your blood works for that.
Anxiety, stress and fear may also trigger muscle twitching.

*Ninth, if your EMG came up "dirty" it doesn't necessarily means ALS or MND.
Diseases such as Chronic Neuropathy and others, as well as pinched nerves, spine problems, etc., may cause an EMG to come up dirty. So, do not panic!

*Tenth, if you definitely were reassured by your Neuro that you do not have ALS, just stay away from the Internet and try to enjoy your life the best you can.



I sincerely hope this post helps you. Took me several minutes to type it using just a weak finger.


Thanks.


NH

 

[ottawa girl]

NH - great post. David should make a stickie...there are others very similar, but yours is succinct.

 

[vickim]

I agree Elaine, this needs to be a stickie. Good post NH. I hope they all read it.

 

[paul71]

I agree 100% regarding the "I just ran 5 miles and now I'm twitching" posts, but there are also some who have "something" going on and have questions regarding the early (pre-diagnosis) symptoms of PALS.

My post is obviously self-serving but I just wanted to point that out. Some people are truly scared and stuck in limbo. PALS have great insight that even some doctors do not possess. Those of us in limbo have legitimate questions. Everyone has the option of simply avoiding the DIHALS forum if they tire of reading the endless twitching posts.

Again, no offense intended, I hope everyone gets what I'm saying. I am very appreciative of all the work that PALS have taken to answer my questions.

 

[Nikki J]

Hi Paul

I don't think any of us were talking about you. I certainly wasn't. You have posted a fair amount but you post sensibly if you know what I mean. You don't recycle the same issues and try to make anyone give you an ALS diagnosis. This is message board of course people can post I think you see the difference between the problem children and folks like you? Unfortunately I suspect that no one is going to identify themselves as a problem!

I hope you get answers soon limbo is a miserable place to be!

Best wishes
Nikki

 

[Nighthawk]

@paul71:

There will always be exceptions to any rule you setup.

I have been a registered (again, registered) member of this magnificent forum since January, this year. But, as I stated before, I was lurking here much, much longer than that (since June 2011).

Since my time here, (as a lurker and as a registered member) I have paid a lot of attention to the DIHALS sub-forum. I have read countless threads started by newbies in these 2 years and I have also read the responses to them by dedicated forum members some of which have sadly passed away.

I can tell you with a 100% confidence that the majority of the newbies (I would dare say that 9 out of 10) that post on that DIHALS sub-forum do not have ALS or any MND.

I carefully read their posts and have come the the conclusion that many of them, as soon as they notice some body twitching, use an Internet Search Engine and type in "muscle twitching" and the first links they find point to this forum and they end up landing here.

They could start reading annonimously as "Guests" and start from the Stickies at the top of the DIHALS sub-forum but, instead they go through the hassle of setting up an e-Mail account and registering and starting a thread.

I know some of them are genuinely scared to death and are looking for answers from us.
I don't mind answering their questions by replying on their threads but, they also need to do their homework. That homework starts by seeking for answers from the experts such as a GP or an ENT.

I have gone back to threads at DIHALS that look uncanny similar. The same questions were asked and the same answers/replies were given.
That would be a starting point for them to read and learn from old threads if they ignored the Stickies.

I have come across with threads like these multiple times:

*I was exercising and all of a sudden my whole body started twitching.
*My lips are twitching.
*My Neuro says I do not have ALS but I still think I may have it.
*My EMG came up "clean" but I still fear I may have ALS.
*I stated feeling "weak" and my calves are twitching but, I felt better for a few days and, now again I'm starting to twitch (ALS doesn't come and go nor improves).
*I drank too much coffee and now my muscles twitch.
*My eyes are twitching, could it be ALS?
*I was weightlifting and now both arms twitch.
*I choke when swallowing water and I think it might be ALS.
And...I could go on and on and never end.

I am not a sadistic person as I do not enjoy other people's misfortunes and I do not want ALS/MND upon my worst foe and that is the reason I reply to them, to calm them, to reassure them that they do not have a dreadful disease like this one.
But, we all are human beings and we have limits.

I think that many issues are being recycled again and again looking an ALS diagnosis from us. A kind of diagnosis that not many Neurologists want to make and it can even take them months or years for them to come up with such diagnosis.

I know there might be a minority of folks like you, that are still seriously looking for answers and haven't found them yet. We were not referring to you in particular but to those who come to the forum and keep posting and posting the same old recycled questions without knowing that the the person who is replying them at the other end is making a titanic effort to type just a short sentence.


Thank you.


NH

 

[edwards5257]

I am one of the minority people who could go on and on but don't. I basically am also undiagnosed and in limbo. I lurk and sometimes ask privately. I garner as much info as I can from the good knowledgeable people who post. Thank you all!