Remember We are people facing ALS

[liz]

AndyDJX -

Only one person mentioned hypochondriacs. Nobody else limited their their remarks to just hypochondriacs. It seems to me that you have latched onto that designation in order to convince yourself that the comments above couldn't be applied to you.

 

[hopingforcure]

Kim,
You can stick around forever, you and people like you are the kind of people who make this board so special.. My goodness anyone even going through symptoms that are debilitating and progressive and undiagnosed. are exactly NOT the people I am talking about, you are a important part of this fine Place. I just want the board to be a helpful, compassionate, fun, humorous, place, but I felt like all posts were taking away from the reason we are here. I was finding the posts were losing focus, and getting hard to read. Please please never ever think you and anyone like you are not welcome..

 

[BethU]

Kim. You are forbidden to leave. If you try, we'll track you down and drag you back.

 

[AndyDJX]

Liz--

It wasn't just hypochondriacs, but those who are irrational. I don't want to get into an argument or be contentious in any way, but if someone with legitimate concerns about atrophy, fasciculations and weakness can't come onto the "Do I have ALS? Is this ALS?" section of the boards and ask others for advice and insight, I don't know why this section exists. I really don't think the posts in this thread were attacking the existence of the "Do I have ALS?" section, it's attacking the irrational abuse of it.

My intentions really were good when I posted in this thread; I wanted to give my perspective. The last thing I want to do is go onto the als forums and start a fight. One of the reasons I visit this site (and this section of the site only) is to find others who are experiencing similar symptoms, but are without a diagnosis, or perhaps found a diagnosis that can point me and my doctors in the right direction.

 

[ZenArcher]

These forums have a lot of information. The problem is if you take the time to look the same questions are asked and answered time and again. If people would simply take the time to search and then read 90% of the questions would be answered without ever posting a thread. Unfortunately people don't use the search and they ask the same question that's been asked a thousand times before and then comes the second problem. They will undoubtedly get the same answer that has been provided a thousand times before and proceed to argue.

People come here everyday looking for information and many of the current pALS and cALS fully understand the anxiety and fear involved in the prospect of an ALS diagnosis. The difference is that the current pALS not only have experienced that fear they've faced it head on and now deal with the weight of the diagnosis and the symptoms that go with it. The current cALS have also tread that same road and now carry the added weight of caring for their loved ones as the disease progresses. They are a wealth of knowledge that should be utilized. They do however deserve the courtesy of using the search and reading the posts before asking the same questions over and over.

Remember many of the answers you receive are typed with one or two fingers, an on screen keyboard or eye tracking software. You came here seeking answers from people with experience in the subject and all they ask in return is the respect to look and read before you ask and then listen.

 

[BarryG]

Well said Jeff! We are not looking to turn anybody off or scare anyone away but as Jeff says it is disheartening to read and answer the same questions over and over again.

 

[brooksea]

I get sucked in sometimes and try to control my frustration now. So, it is hard to read the posts by these people that are truly not ill, except maybe mentally. (not directed at anyone specifically)

Otherwise, I just read - or not. Can't bring myself to reply to many in fear I will embarrass myself by being sarcastic and mean! (As I have done on occasion before!)

edit- anyone that thinks they have ALS symptoms should read tag0620's posts! She is a wonderful example of how she researched the forum and used the info from others on this forum to help her husband! And now it looks as if he does not have ALS!

 

[Al]

By the way Andy, my wife had the same hand symptoms as you, had a carpal tunnel operation 5 weeks ago and is symptom free except she has the atrophy dents and forgot to ask if the muscle would grow back. There is hope. Finding the right doc and believing him/her is the hard part.

AL.

 

[Lorie]

Please read my Blog on Cyberchondria

Hoping,

I noticed that to. I had to put this on my Blog. To many people looking for something they probably don't have.

http://www.wisegeek.com/what-is-cyberchondria.htm

Lorie

It has taken three years for my EMG's to come back abnormal. I am going back to my Neuro, next week because I have to. You do not see me constantly dwelling on my symptoms. I hardly talk about it and deal with it. It is becoming harder to deal. So if you are pretty damn sure you (anybody) don't have ALS. Consider your self "The luckiest person on the face of this earth"! I have been through it ALL with my brother Tim. It is the most horrible disease on earth. The only thing we have not went through with his ALS, is death!


Lorie

 

[nishant]

I agree, when my symptomps started I avoided being a google doctor for a long time. I did this for my own sanity and ask everyone I know to not use internet till they find out from doctor what they have. So my humble request to all is to not use either this or any other forum or google as your doctor.

 

[laurajh]

Gosh, I hope I didn't upset anyone by my 2 threads earlier this week. I did have (what to me) was a valid concern for a loved one that already has a known 50% chance of having inherited a screwy gene.

In my second posting, I only wanted to state the fact that my worrying about someone else's health started causing even ME to twitch, so I can certainly vouch for the fact that anxiety can set off that reaction.

I have so much empathy for what people are dealing with. Since 2004 my poor husband and I have lost 2 loved ones to this beast, and one cousin currently living with it.

ALS sucks.

 

[rose]

Hoping, Thanks for the sentiment. It needed to be said.

It is one thing to have a question, its OK to have a question, ANY QUESTION, but to continue to ask and ask and ask for confirmation that symptoms that typically don't point toward ALS, somehow, in that particular poster's situation possibly/ maybe/probably could, if only the person asks repeatedly enough...

If you think there is something wrong, go to the doctor, if you think the doctor is wrong, go to another one. But don't come here and keep searching for someone to agree with you, if what you're experiencing does not involve actual symptoms of a neuro/muscular nature. THAT'S when searching previous posts can help the most.

I think the "do I have ALS" forum is very valuable, and much needed. Just in the relatively short while that I've been a member, there have been many to post there with puzzling atypical symptoms, and they very much benefit from the experience of others.

Re: Tracy (tag0620) ... The information she was able to find and arm herself with, and her tenacity to get to the truth is staggering. She is a role model! ~ Her husband's situation has long made me want to make an (un-needed and unnecessary, and completely sarcastic ) observation that its a shame there is not a "matchmaking" network to fix up the folks who seem to want to have an ALS diagnosis with a neurologist who is careless enough to give out an unfounded one!

 

[caroliney]

ALS is like a snowflake different with each one.

My Husband was diagnosed with ALS after 2 years.

In the early stages, when his speech began a slight slur, all doctors said nothing was wrong with his speech. All tests were negative, did not show anything. Gradually, that changed, though.

Each ALS patient feels different symptoms, at a different pace. My husband lost his ability to speak completely, but was able to walk, and use his body to his lasts breath.

This site brought to me more information, more compassion during those confusing years than anyone could imagine.

While looking back, I feel God lead me to this site of friends for a reason. I desperately needed the support, information, and knowledge that was here.

I thank God for this site and to each family friend that contributes to it. Each one is very special and dear to my heart.

God Bless You! I pray for a cure every day!

Hugs,
Caroliney

 

[brooksea]

It appears no one is listening?

 

[brendapals]

Just me here, thanks hoping-for putting this on here.

I too am guilty of NOT READING on some topics, so as not to be tempted to run my mouth!

-brenda

p.s.- and Kim, you can run but you cannot hide! Don't you go anywhere!