Remember We are people facing ALS

[thelma313]

Maryoseuk, I just want to stick up for the people that actually have ALS because they really do their best to inform people who come on the forum with questions about symptoms related to neurological disorders. This particular thread expresses the opinions of those PALS and CALS that feel a little bit frustrated when someone comes on the forum with symptoms that have nothing to do with ALS and every attempt to calm their fears is refuted with more irrational fears. This is not about the whole "Do I have ALS" section. A lot of the people here are dealing with a lot more than twitching or a small bicep and it is sometimes difficult to hear someone panic about minor symptoms without listening to the advice from those who actually have the disease they fear most, some of whom are typing with great effort, exerting the use of their diminishing hand muscles. This forum, is after all dedicated to those people. No one wants to discourage people with symptoms from coming here and feeling free to ask questions.

 

[hopingforcure]

We started the DO I HAVE ALS section for a couple member's who actually ended up not having ALS, and have long since left our community. I think Thelma says it exactly correct we surely do not have a problem with undiagnosed. people, heck most of us start out that way, (myself included), so I would not put anyone down for questions, concern.. And a place to vent, it is simply the people that are just over-board that have from time to time over run the board..

 

[bart1]

Hi,

I understand your opinions completely, you are the onces facing and fighting this disease and I really understand that it is very hard to have to answer the same questions over and over again.

But , for the twitching and cramping questions. The internet is full of 'information'. And like many people said here before this disease comes in a lot off different ways. I think scared people are just trying to find one pattern but I guess there isn't one. And instead of believing their doctors it seems to be that people have more faith in answers of pals.

Twitching is a symptom of ALS but not the only and main one, but still is one. In my case I've got twitching and cramping, so those are 2. An when I read that leg cramping is more benign than hand cramping (that I have) I start wondering... But maybe the most 'important' like weakness and atrophy I don't have.

As people read posts where twitching and or cramping can precede weakness for many months or years , I think it's natural that you start to panic. I really don't think anyone wants to upset another person here but some people (I count myself) are very scared.
But I really understand that pals are really getting fed up by people asking the same thing over and over again.

Only the pals and cals know what it's like to deal with this and maybe a lot of people here don't realize that.
(sorry for the bad English, hope I expressed it well, meant well)

 

[rose]

I think the uncertainty of not having a diagnosis is a hard hard thing to deal with. I did not find this forum until right before I finally got some answers from the doctors, but it would have been a real blessing to me if I'd known about it sooner.

I would hate to turn people away that are dealing with real health concerns, would never want to be a part of that!

Like Hoping stated just now, and also back when she started this thread, new anxious posters taking more of the search responsibility upon themselves would be greatly appreciated, and is needed! I really liked the idea of a "probation" time, via requiring a number of posts, before new members could start their own threads... Of course, then they couldn't post on the "Introduce Yourself" forum, but many don't anyway.

If you've just found this forum, take time to read past posts, use the search function, or just scroll back through. Also, please limit the use of the quote button, oftentimes its not necessary, and you can easily copy and paste sections of previous posts that are what you want to focus on.... You can learn a lot, especially if you're really trying to arm yourself with good advise, rather than making an argument for something you've been told by your doctor's is not plausible.

I think the most frustrating thing for me, is to read a question (that has just been posed by someone else!) & several PALS or CALS will take the time to respond with thoughtful answers, but its not enough for the person asking, and they keep trying to find another way to get the answer they want.

 

[Zaphoon]

I apologize! I am one of the people guilty of not having introduced myself on the "introduce yourself" thread.

It's a little late now. I've always felt bad for not properly introducing myself.

Well, not that I got that off my chest, I feel better.

Zaphoon

 

[rose]

Kim,

You have brought so much humor into our lives! Long live Gumby! ~ and nice to meet you, I didn't intro myself either... but then I wasn't planning on hanging around as I had no intentions of actually having this STUPID EVIL DISEASE.... so, yeah, Hi, my name is Rose (sort of) and I was new here once

 

[liz]

Bart - The opinions of anonymous PALS on an internet forum are no substitute for your physician's advice.

Casey - Maybe you could post more often, offer your insight to help us deal with all of these inquiries and reassure folks who are now in the position you were in when you sought help from the forum. We have "otherwise-diagnosed" members who contribute in this way. Their participation is constructive and greatly appreciated.

 

[trfogey]

But , for the twitching and cramping questions. The internet is full of 'information'. And like many people said here before this disease comes in a lot off different ways. I think scared people are just trying to find one pattern but I guess there isn't one. And instead of believing their doctors it seems to be that people have more faith in answers of pals.

I'm not an old-timer on this particular forum, but I have been around the ALS community for a couple of years since my diagnosis in 2007. You couldn't have stated the problem here more clearly -- people substituting paranoia and Internet searching for competent medical advice. Many diseases present in various ways. How many chronic disease forums are some of you people hanging out on instead of getting your butts to the medical providers that can answer your questions? If you are not bothered by your condition enough to get the appropriate medical attention, why on earth do you think anyone should waste any further time with you?

Twitching is a symptom of ALS but not the only and main one, but still is one. In my case I've got twitching and cramping, so those are 2. An when I read that leg cramping is more benign than hand cramping (that I have) I start wondering... But maybe the most 'important' like weakness and atrophy I don't have.

As people read posts where twitching and or cramping can precede weakness for many months or years , I think it's natural that you start to panic. I really don't think anyone wants to upset another person here but some people (I count myself) are very scared.
But I really understand that pals are really getting fed up by people asking the same thing over and over again.

Panic is an emotional and mental disorder. They make all kinds of wonderful pharmaceutical concoctions to treat it. Consider hanging out on some of the panic disorder forums out there on the Internet -- I'm sure they can give you more appropriate advice on how to treat what is truly ailing you.

Only the pals and cals know what it's like to deal with this and maybe a lot of people here don't realize that.
(sorry for the bad English, hope I expressed it well, meant well)

The vast majority of the people here do "realize that", since they are either PALS or CALS. And we have a heckuva time understanding why somebody appears to want to have this disease. Trust me -- we'd love to have our doctors telling us that we don't have this disease and that there was some drug we could take to make our symptoms go away.

 

[maryroseuk]

Hi all again, hope my posts didnt upset anyone i just wanted to put my opinions on here, its a hard debate thats all and i can see it from both sides, its just so hard when you are the one going through the panic thats all, and it definatly isnt that people want this illness its just so hard to see past it, ive been very thankful for the board it has made me learn a lot and i have since rasied money for mnd chairtys here in the uk.

You are right liz i should post more and contribute to the board, i just assumed as i was diagnoised with severe bcfs i shouldnt but i see now that i should.

Anyway take care

Casey

 

[joelc]

I get the feeling there are some people that still do not understand what this thread is trying to get across.

We welcome people who do not have a diagnosis yet.

We are here for you and try to help inform and comfort everyone we can.

What the problem is is that there are a number of people who will not listen.

They have been told repeatedly by qualified neurologists that they don't have ALS.
Then they come here and we tell them their symptoms are not ALS.
Then they start to argue. They keep repeating their symptoms and keep arguing.

That is what is wearing.

 

[Al]

Once again, well said Joel.

AL.

 

[loralie]

AndyDJX,
I understand what you are saying and I am sorry for what you are going through. The fact is that having no answers, being in limbo and wondering, is really tough. You know that something is going on with your body ... you are not inventing your symptoms ... but there is no name for it and no diagnosis ... at least not right now. (For many many months before my husband was diagnosed with ALS and another disorder, we lived in that limbo. it is its own torture ... the unknown). I think it is fine that you search for your own answers ... continue to be your own advocate, look for answers/support from the folks here. Please also try to live in the now, which is all any of us have. concentrate on all you can do now. try not to worry about what might happen, because it might never happen. While you have something going on, it is unique to you and you don't know where it's going so try not to fear the worst.

 

[liz]

Pat - I'll catch up with you via PM, hang tough.

 

[brooksea]

Man! I would love to help some people, but I just can't take it anymore! Reason is lost to hysteria it seems...

 

[Al]

Having a bad day CJ?