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Why are some people so hard on Kerri?? :(

PostPosted: August 4th, 2003, 12:32 pm
by reneeintx
To the ones that tell Kerri to turn off her computer~

Why don't you just not click on her post?? If you don't feel you can respond in a manner we are supposed to here, than don't post a reply.

Kerri has the GUTS to write posts that are of value here to many, especially me. I could be the one writing her posts but won't because of knowing the way some people will repond. I have great anxiety, and hypochondria, and wrestle with the thought of dying from ALS just about everyday. I feel alot like Kerri....

This site is making me sad :(

Renee

PostPosted: August 4th, 2003, 2:28 pm
by uber
Thing is, im always responding rather nastily to Kerri's posts, but I was once like her, terrified I had some illness, most days I still am terrified, more recently than ever, ive had twitches in my neck and on my bottom lip and body jerks, i must get quite a few of them a day, which im worried is Myoclonus. Even though ive had a clear MRI, im still very much worried about MS or ALS, the other day I couldnt concentrate I was so worried about CJD :\

The thing is though, that ive had clear testing and have been diagnosed with an Anxiety Disorder, I have to assume (for now) that this is the core of my problems.

This is where reading Kerri's posts kind of annoys me, she has ignored all of her dignosing and testing, over at braintalk.com they have told her not to post on the boards anymore as she clearly doesnt have a neurological problem. Im not saying she doesnt have Neurological symptoms, but they certaintly are not ALS symptoms.

I know I could easily ignore Kerri's posts, but the fact is that those who are harsh to her in her threads are trying to help her...she's on here asking for our advice and our advice is what she is getting, so I dont think anybody needs to stick up for her, she's a big girl and knows what she's doing. The problem is not with us ignoring Kerri's posts, its Kerri ignoring OUR posts. Time and time again she's been told from us and doctors that she does not have anything wrong with her, except the battle in her head, and it would appear there is solid clinical evidence of this in the countless and should i say (pointless?) testing. I just dont have much respect for people who come to forums like this seeking help and ignore the help they get, its a bit rude if you ask me :\

PostPosted: August 4th, 2003, 6:45 pm
by lbair
I'm from over at the braintak forum, and only found out about this place after someone posted a link about the woman supposedly dx with ALS (Carol). I have read quite a few of Kerri's posts here and her posts over at braintalk. I thought I would jump in here after reading uber's post.

uber said:

"over at braintalk.com they have told her not to post on the boards anymore as she clearly doesnt have a neurological problem."

Where in the h*ll did you read that? I have read ALL of Kerri's braintalk posts and even went back and reread ALL of them a second time and NOWHERE does it say that AT ALL!! Other than one poster who said quote "I think everyone needs a break once in a while and you definitely do."........everyone has been overwhelmingly supportive and reassuring.

Kerry definately has some health anxiety, but so does just about EVERYBODY here............give the girl a break,......and like others have suggested........... if you don't like what she has to say, then DON'T READ HER POSTS!!!!!

Sorry uber.......had to set the record straight.

PostPosted: August 5th, 2003, 3:05 am
by uber
whats the link to braintalk again?? Id swear i was reading a post of hers on there, about the usual ALS thing and the reply was that she cearly didnt have ALS and shouldnt post on those boards. I wasnt making it up :\ kinda looks like im beein a bit of a bad guy here when im really not, at the end of it all, id like to help Kerri.

edit: just looking on the braintalk forums now, Kerri's latest post back when I checked was this one:

http://neuro-mancer.mgh.harvard.edu/ubb ... 16436.html

Where it appears she's beein told not to post on the ALS forums, this was what I was reffering to in my previous post.

Hi

PostPosted: August 5th, 2003, 6:42 am
by KERRI
uber wrote:whats the link to braintalk again?? Id swear i was reading a post of hers on there, about the usual ALS thing and the reply was that she cearly didnt have ALS and shouldnt post on those boards. I wasnt making it up :\ kinda looks like im beein a bit of a bad guy here when im really not, at the end of it all, id like to help Kerri.

edit: just looking on the braintalk forums now, Kerri's latest post back when I checked was this one:

http://neuro-mancer.mgh.harvard.edu/ubb ... 16436.html

Where it appears she's beein told not to post on the ALS forums, this was what I was reffering to in my previous post.



Uber I know you mean well, but I never post on the ALS forum.

Kerri

PostPosted: August 5th, 2003, 7:44 am
by lbair
EVERYBODY is warned to STAY OFF of the ALS forum..................for OBVIOUS reasons.

PostPosted: August 5th, 2003, 8:52 am
by Pole
I've read many posts of PALS on ALS forum. There is nothing scared I think. Almost all said that first symptom was weakness, some of them even didn't notice fasciculations untill neuro showed it to them. When I read these posts I realized that what we think is weakness is not real weakness. They say about REAL weakness.

And even famous here HarryAZ who claims that he had fasciculations a long before weakness said in one of his posts that he realized that now. His first neuro visit was caused by weakness (he was unable to rise his arms). During his non-weakness period fasciculations were not a big problem for him and he hardly noticed them.

There is a lot of CALS on ALS forum. They also say that weakness was the only obvious first symptoms of their PALS. Most of them will tell that twiching alone is nothing to worry about.

regards
Marcin

PostPosted: August 5th, 2003, 10:16 am
by lbair
If you choose to read the ALS forum posts and archives, you WILL find the exception to EVERY rule! ie....if you've had a clean EMG or two you're going to feel pretty comforted by that UNTIL you read about a PAL(S) who have had multiple clean EMGs go on to be diagnosed with ALS (exception to the rule)...........if you have fascics with no weakness you're going to feel pretty comforted by that UNTIL you read about a PAL(S) who had fascis first without weakness (again, exception to the rule).........BUT.......THEY EXIST on those types of forums. Therefore people are warned to avoid those forums because the consequenses of reading such cases are evident by the MANY who come through the neuromuscular board convinced that they MUST have ALS (even though they have been assured by many a doctor to the contrary) because they were reading those forums and found an *exception*. ... NOT A GOOD IDEA!!.....................Best advice I've ever been given............STAY OFF of the ALS forums!!