How long from twitching to weakness

[Blizna]

I know this is very common question, but I searched and nobody responded - people usually told "and weakness later".
I know mostly fascics are after weakness but I would like to know if anyone has it before, how long it took?
Thank you!

[Jeliota]

Depends.

:-D

[Jeliota]

Seriously, Blizna, I've gone back and reviewed all your posts. You shouldn't be here any more. You're letting ALS control your life, and you don't even have it.

You should either see a psychiatrist or do a search on Cognitive Behavior Therapy, which is commonly used to treat health anxiety, and follow the instructions.

:-D You are just fine. :-D

Here's my advice on "curing your ALS."

1) Get off the internet.
2) Stay aggressively busy.
3) Be conscious of your thinking. Interrupt bad thoughts and replace them with something positive.
4) Accomplish something every day that makes you feel good about yourself.
5) Treat yourself to something every day that makes you feel good.
6) If you really just can't get past it, go seek help.

[ltr]

Blizna - everyone is different, but most have said if you don't develop weakness in about 6 months, the twitching is probably benign. You definitely have posted some pretty educational information about twitching from your neuro, what did he/she say about it?

[Jeliota]

Blizna - everyone is different, but most have said if you don't develop weakness in about 6 months, the twitching is probably benign. You definitely have posted some pretty educational information about twitching from your neuro, what did he/she say about it?


Would you say that's perceived, clinical, or "obvious to everyone" weakness?

[CindyM]

Now here it is. This is the hardest hting for me to figure out. I say I feel weak. SO how do I prove it? How does my doctor measure it? I think I need to wait until it is "ovious to everyone" weakness. I have developed my own scale, just for my own purposes. This morning I had a hard time pulling my arms out of a heavy sweater. There is a measurement for me. If I still have trouble by Spring I will start paying attention to how hard/easy it is to put my arms into a thin shirt.

[shopathonic]

Jeliota--
This is a support forum. Your posts have an aggressive, impatient, almost hostile edge that is completely counterproductive. The main purpose of your posts seems to be to prove that you are the smartest person in the room and to rudely dismiss anyone who doesn't measure up to your standards. Who are you to say that someone should or should not be here? That's very highhanded. Moreover, by your own criterion, you should not be posting here, since you do not have ALS and you have posted MORE than Blizna has.

As for your tart list of self-improvement suggestions for Blizna, I can only think of this gem of wisdom from the ancient Greeks: "Physician, heal thyself."

[shopathonic]

Blizna--
I hope you will keep posting here. I have found your posts to be informative, helpful, and, most important, kind and compassionate in tone.

Thanks,
Jeff

[Jeliota]

Jeliota--
This is a support forum. Your posts have an aggressive, impatient, almost hostile edge that is completely counterproductive. The main purpose of your posts seems to be to prove that you are the smartest person in the room and to rudely dismiss anyone who doesn't measure up to your standards. Who are you to say that someone should or should not be here? That's very highhanded. Moreover, by your own criterion, you should not be posting here, since you do not have ALS and you have posted MORE than Blizna has.

As for your tart list of self-improvement suggestions for Blizna, I can only think of this gem of wisdom from the ancient Greeks: "Physician, heal thyself."

shopathonic...some people spend months to years worrying over this disease uselessly. I'm a blunt Italian who comes across as rude because...I don't know. Maybe I am rude. But I only have Blizna's best interests at heart. Blizna has twitching without weakness or atrophy and has been cleared by his neurologist through EMG/NCV. He has a self-described history of medical anxiety, and I sympathize with him because I used to think I had ALS myself.

As for me, I have no medical anxiety, but I plan on being here until Al and Cindy tell me to leave. I hate to see people suffer needlessly.

As a side note, I think if you will go back and read your and my interactions on this forum with an open mind, you might be surprised as to which one of us is the aggressor.

Blizna, do you think I'm correct in my advice to you, or am I being rude? Perhaps I need to change my tactics.

[shopathonic]

Jeliota--
There is important business to be conducted on this forum--sharing information, providing emotional support, and giving guidance. All this is more important than your efforts to defend your chronically tart, dismissive, and snippy tone toward people who are hurting, emotionally and/or physically. You are not a professional of any kind, and you often presume to make definitive diagnoses--whether ruling a condition in or out--in a way that is completely irresponsible, your derisive tone aside. I'm sure, for example, that Blizna is bound to feel worse, not better, after being subjected to your barrage of condescension.

As for who should or should not be posting here, I for one vote for more posts from Blizna and fewer from you. His posts have been informative and, more important, have brought a compassionate and supportive tone to the forum that you would do well to emulate.

Jeff

[Jeliota]

Jeliota--
There is important business to be conducted on this forum--sharing information, providing emotional support, and giving guidance. All this is more important than your efforts to defend your chronically tart, dismissive, and snippy tone toward people who are hurting, emotionally and/or physically. You are not a professional of any kind, and you often presume to make definitive diagnoses--whether ruling a condition in or out--in a way that is completely irresponsible, your derisive tone aside. I'm sure, for example, that Blizna is bound to feel worse, not better, after being subjected to your barrage of condescension.

As for who should or should not be posting here, I for one vote for more posts from Blizna and fewer from you. His posts have been informative and, more important, have brought a compassionate and supportive tone to the forum that you would do well to emulate.

Jeff

Technically, what you are suggesting with Blizna would be called enabling.

By the way, I am in fact a professional of some kind :-D, though not in the health field.

[Al]

OK guys, play nice. Jeff you've taken it as a personal mission to straighten out Jeliota. If anyone gets out of hand here Cindy, David or myself have a few available options to use. You two bickering and sniping at each other is counter productive to the intent of these forums. Everyone is entitled to an opinion here as long as it is not against the terms of service. The written word sometimes sounds harsh to some readers. No ill intent may be intended. Try to be a little more tolerant both of you. Thanks.
AL.

[shopathonic]

That's what I meant--you are not a healthcare professional of any kind, yet you wrongly presume to rule out this or that condition without having examined anyone.

It is not enabling to adopt a pleasant, supportive tone with someone in need. Professional counselors and therapists make their living doing just that. So techinically, what you are doing is harmful, not helpful. It is DISabling to adopt a harsh, dismissive, condescending tone toward people who are in physical and/or emotional pain. The idea is to give reassurance, not to rap people across the knuckles for not living up to your own no doubt impeccable standards of mental health.

And I do indeed hope to enable Blizna's efforts to communicate his knowledge and experience to others on this list, and to discourage you from making them feel even lousier about themselves than they already do. If you feel that you have a wealth of knowledge to share with people out here, that's great. That can be done without emphasizing with each syllable how much smarter and more together you are than everybody else. Techincally, that's called overcompensating for some personal insecurity of your own. For that problem, I quote you back to yourself: "If you really just can't get past it, go seek help."

[Jeliota]

OK guys, play nice. Jeff you've taken it as a personal mission to straighten out Jeliota. If anyone gets out of hand here Cindy, David or myself have a few available options to use. You two bickering and sniping at each other is counter productive to the intent of these forums. Everyone is entitled to an opinion here as long as it is not against the terms of service. The written word sometimes sounds harsh to some readers. No ill intent may be intended. Try to be a little more tolerant both of you. Thanks.
AL.

I'm sorry Al. I honestly didn't think I was being intolerant or sniping at shopathonic. But, then again, I didn't think I was being condescending to Blizna, so perhaps my writing is not coming across as I intend it. I'll do my best to tone it down and be more careful.

[ltr]

Jeliota does seem to come off somewhat harsh and for some reason especially to me. Reading his previous posts I believe I read that he was suffering from hypochondria, yet is on here to straighten all of us out. I don't appreciate it and in know way was my post even remotely connected to any of his posts.

I appreciate shopathonic bringing this to the moderators attention because I have gone out of my way to tell Paul (Jeliota) that my posts aren't aimed toward him, since, for some reason, he doesn't like anyone adding their thoughts, research or education to a thread he has already straightened us out on. If we look hard enough, we will notice many very educated and long time members have stopped posting. These antagonizers are the reason why. This I know for fact, I have talked to them. Anyway, I only occasionally post, am very ill and actually have many things I would like to talk about, but haven't. I sure hope the forum goes back to the way it was several months ago so we can do that again. Thanks Al and Cindy for trying, though I am suprised you pointed out Jeff's post and not the rotten one Jeliota wrote to Blizna.

Cindy - I have had the same problem about weakness. The docs at first said I didn't have it because I could press their hand or push my leg to their arm. Now that I can't push those things very well, their story has changed and they say I am getting worse. If they knew me before the initial "push" they would have known I was getting worse then!

[Jeliota]

Jeliota does seem to come off somewhat harsh and for some reason especially to me. Reading his previous posts I believe I read that he was suffering from hypochondria, yet is on here to straighten all of us out. I don't appreciate it and in know way was my post even remotely connected to any of his posts.

I appreciate shopathonic bringing this to the moderators attention because I have gone out of my way to tell Paul (Jeliota) that my posts aren't aimed toward him, since, for some reason, he doesn't like anyone adding their thoughts, research or education to a thread he has already straightened us out on. If we look hard enough, we will notice many very educated and long time members have stopped posting. These antagonizers are the reason why. This I know for fact, I have talked to them. Anyway, I only occasionally post, am very ill and actually have many things I would like to talk about, but haven't. I sure hope the forum goes back to the way it was several months ago so we can do that again. Thanks Al and Cindy for trying.

Cindy - I have had the same problem about weakness. The docs at first said I didn't have it because I could press their hand or push my leg to their arm. Now that I can't push those things very well, their story has changed and they say I am getting worse. If they knew me before the initial "push" they would have known I was getting worse then!


ltr...I haven't posted anything to you since the night of annmarie's diagnosis, and I deleted all of that. My question to you in this thread was honest.

I don't know. All I can do is read this and say, huh? I don't understand. I truly don't. I'm sorry that I'm obviously coming across very differently than I intended and that I've caused this level of animosity. I've already promised to try to do better. Do you want me just to say I'm leaving?

[Icanmanz]

Hi, ltr! Have you been diagnosed yet? Sorry for asking, it's kinda hard for me to try to keep up with everybody. My mind is still in sort of a fog, since it's almost 5 months since my son passed, and it is still laying heavy on my mind. With the holidays being so close, I am getting prepared to hurt all over again. These holidays are going to be the first ones without my son, and it is killing me already. God bless you folks, will be praying for everone on this forum. To the ones that have passed (quite a few) these past few days, may they rest in peace!

Irma

[ltr]

No. I don't want you to leave. My wish is for everyone to understand how the people here must feel, the fact that they're here alone. What if they have no one else and rely on the support from us and they get a post that simply pushes them away. I hate the thought of others suffering, even emotionally. And since you say your questions were honest, then, like I told Cindy, the docs thought my weakness was perceived because they didn't meet me when I was unbelievably strong. Now they can see the difference.

Irma - I think about you often and am so sorry for what you are going through. I hope you have plans to keep really busy throughout the holidays, doing good for others in your son's memory. I have been diagnosed, but with polymyositis. The problem is that I have twitching that is becoming localized and the docs are stumped by it because it is not usually a symptom of poly. I have recently developed atrophy of my right hand and my right ring finger is not working correctly. The cramps are so severe that I had to sit down while shopping yesterday, take off my shoe and sock and pull my twisted toes back to where they belong. I am really scared my diagnosis is going to change, but I am a little prepared for news like that. My next EMG is Thursday. Thanks for asking, it feels good to get that out!

[Icanmanz]

ltr, I read your last post, and it brought back memories, like when my son dropped by after work, and told me, "Mom, look at my hands. They are getting all messed up." I took a look at his hands, and my heart broke. I didn't want to cry in front of him. I told him I had to go to the bathroom. Once I closed the door behind me, I let it all out. My son lasted 15 mos after dx, let me tell you I suffered terribly right along with him. I had to hold so much of it, because I did not want for him to see me cry. All I can tell you ltr, is that it is a long sad, sad story! I need to quit posting about it, because I am beginning to feel really bad. May God bless you, and I pray to God that everything turns out ok for you. Bless you!

Irma

[scared of als]

I just have to say we are all very concerned especially the undx. I havent been spending 8 hours a day like i used to ive been spending time with my hubby and family and taking walks. leslie does have a lot of good info she does mean well,,,, i no i got mad but she was right what she said to me,, and i took it into consideration. People should be doing better when they get help from pals obviously it doesnt work for some of us... i admit iam stil scared but iam going to try to let it not ruin my life...thanks jenny

[Jeliota]

I just have to say we are all very concerned especially the undx. I havent been spending 8 hours a day like i used to ive been spending time with my hubby and family and taking walks. leslie does have a lot of good info she does mean well,,,, i no i got mad but she was right what she said to me,, and i took it into consideration. People should be doing better when they get help from pals obviously it doesnt work for some of us... i admit iam stil scared but iam going to try to let it not ruin my life...thanks jenny

I am glad to hear you are doing better!

[Blizna]

Thank you for your words, all of you. What Jeliota wrote is maybe aggresive, but I think its helpful. Some of us really need somebody to force them to dont let ALS-fear ruin their life.
I can say that after reading what he wrote I was a bit more calm. Maybe it sounds crazy, but its true. Some of us need to hear they are OK because we cant accept it.
However, Im twitching just 4 months so Im still scared, but after finding this forum it is so much better. And just due to support of you all.
I like how you care about members relationships and thats so nice on this forum.
I can say Im also trying to help - Scared of als could tell how we chated on the chat program I developed just for me and her.

This is the only forum that I have ever visited where Im feeling something. So much support and help, no matter if written in ironic or kind tone. I believe all people here have the best intentions to help each other and themselves too.

PS: Sorry for my spelling, grammar, I do my best.

[CindyM]

Hi belizna- I think there is a grain of truth to what you say. I have a friend who says her anxiety has gotten out of hand since her elderly husband passed. He used to provide a role for her in telling her when she needed to take a deep breath. I always get mad as heck when my family tells me to take a chill but when I look back, they were usually right. :-D

Leslie, The docs at first said I didn't have it because I could press their hand or push my leg to their arm. Good point. My doc at the clinic is weaker than I am. My local docs are large and muscular, so they of course find me "weak" I'll know it is time to worry if my slender little clinic guy suddenly gets stronger than me! lol.

Al- what can I say? You are always on spot. I agree we should lay off trying to correct another's attitude, since we none of us know each other face to face so it is really hard to know for sure how a post was intended. I think I said it before: if anyone truly annoys you, just click on their name and add them to your ignore list. After all, does it really matter who is "Right" or who is "wrong?"

[shopathonic]

Cindy--
I agree with much of what you say. In principle, there should be no need for posters here to monitor the tone of other posters. That's what the moderators are for. In my view, Jeliota's harsh, reproachful reply to Blizna should never have seen the light of day--it struck me as truly appalling and would not have been allowed on many other moderated groups--it came off as more of an attack on someone else's alleged shortcomings than an attempt to help. But that's just my opinion. One hopes, in view of the foregoing discussion, that this kind of thing will not happen again.

Jeff

[Jeliota]

Cindy--
I agree with much of what you say. In principle, there should be no need for posters here to monitor the tone of other posters. That's what the moderators are for. In my view, Jeliota's harsh, reproachful reply to Blizna should never have seen the light of day--it struck me as truly appalling and would not have been allowed on many other moderated groups--it came off as more of an attack on someone else's alleged shortcomings than an attempt to help. But that's just my opinion. One hopes, in view of the foregoing discussion, that this kind of thing will not happen again.

Jeff

I'm sorry, but you are keeping this up for reasons beyond my understanding. Blizna thanked me for my help, and yet you keep going. Actually, I think the moderators have done a nice job. No one has indicated that any of my posts were inappropriate.

Please don't destroy this forum with your hatred.

[shopathonic]

"I'm sorry, but you are keeping this up for reasons beyond my understanding," Jeliota wrote, precisely keeping it up himself--and to what end? To show contrition for his appalling assault on Blizna? To promise to adopt a more compassionate and warmer tone in the future? No . . . to strut and crow, in predictable fashion.

The purpose of this forum should be to provide support to PALs or potential PALs--not to attack them. Whether that elementary piece of human decency strikes you as putting anyone in their place based on their past behavior--that's between you and your conscience.

You said in an earlier post that you would try to "do better." One hopes that you mean this and are through trying to score points and to prove how smart and tart you can be.

Thanks,
Jeff

Jeff

[Jeliota]

"You said in an earlier post that you would try to "do better." One hopes that you mean this and are through trying to score points and to prove how smart and tart you can be."

I've sent you a PM. I'll no longer respond to you in the forum. This is my attempt to do better. There was nothing wrong with my post to Blizna, as he himself has said.

[shopathonic]

"Please don't destroy this forum with your hatred."

Moderators--how can you let such a horrific statement pass--accusing a fellow poster of "hatred" with no evidence to support such a nasty accusation, itself an obviously hateful and spiteful gesture? I thought that personal attacks were not to be allowed in this forum--yet we see in this thread a nasty assault on Blizna and now a gross verbal attack on me.

No one has ever lodged a complaint about any of my posts. Several people have taken exception to Jeliota's chronically snide tone toward others on this list--a tone that has now spilled into overt nastiness with this accusation of "hatred"--all because I pointed out his gratuitous asperity toward other posters, and in rather restrained language, at that.

If accusing another poster of "hatred," with no supporting evidence, does not elicit some action by the moderators, then what would?

I doubt that I have to make anymore points on this issue. Jeliota's last post has made my case more effectively than I ever could.

Thanks,

Jeff

[shopathonic]

Blizna is a sweet soul--God bless him for that. But two other posters took grievous offense to your callous reply to Blizna.

I hope that you will place the emotional needs of other posters on this list ahead of your own need to prove how erudite and superior you are. That kind of ego tripping is 100 percent at odds with the purpose of a support group and poisons the atmosphere of discourse out here, which should be based on warmth and compassion--no rampaging egos.

Whether or not your reply to me again is not important--it's the tone you adopt in replying to others that matters.


Jeff

[Al]

Ok. Both of you that is quite enough. This has gone on long enough. You've both made points. Drop it. You've totally gotten off track here.
AL.

[CindyM]

But Paul wasn't talking to you. The person he spoke to did not take issue. So maybe it is time to let this fight go...

BTW- I told Al just that folks might want to be careful of what they wish for. :-D Do you really want more censorship around here? People seem upset enough when we block "cures" for ALS.

I think if somebody says something to you, you can always PM them with why it offended you personally. And if anyone does that and needs help getting an apology, we will be more than glad to help resolve it. I am not sure what is accomplished by airing disputes of this nature this in public, though.

And I can't figure out what gets accomplished (except maybe high blood pressure) when somebody takes offense because of what a member said to a third party. That is one battle I am not willing to fight. Seems to me there are enough real battles to focus my energy on, such as why some states do not have good services for ALS victims, or why we don't have a national registry.

[shopathonic]

Cindy--

Two people on the list did take issue with Jeliota's post--were deeply offended by it. And even Blizna characterized it as "aggressive." And there is another thread where several posters took exception to Jeliota's rather tart tone.

Obviously no one is advocating any kind of censorship. And I'm sure that you wouldn't want to restrain or appear to "censor" any posters who find content out here personally offensive. If you think Jeliota's post to Blizna represents a model of the kind of attitude you'd like to see prevailing out here, that's your judgement. We're just having a discussion about what kind of tone and approach is advisable on a support group. I don't think this point needs any further belaboring. You and Al do a fine job of maintaining the list, and I am grateful for your efforts in maintaing this precious resource. If we differ on this one point, that's no big deal. And you're right--this whole discussion is a diversion from the purpose of the list, albeit a necessary one, in my view, in the interests of discouraging arrogance and encouraging compassion in dealing with posters' concerns.

Jeff

[Al]

True. Lee just came by and told me she would kill me if I WASTE ANY MORE OF MY TIME (her emphasis) on people fighting. Just ban them and be done with it is her thinking.
I'm typing with 1 finger or a head mouse. Do you guys really have any idea how much time I have put into this. Take it easy on a crippled up old guy please.
AL.

[Al]

Next person to shoot their mouth off gets banned. You have really teed me off now. Drop it.

[CindyM]

That Lee is pretty smart. But I knew that when she married you! :-D