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Some ALS info first hand

PostPosted: August 6th, 2003, 11:41 am
by A_guy_with_ALS
I've been visiting this site for a long time now...... even before I was diagnosed with ALS. I notice a lot of you are asking specific questions about ALS. Some of the info being posted is good while some of it is not.

Most of you are looking for that one thing that will definately exclude you from the ALS club. I can not help you with that but I can help provide you with some first hand experiences with this crappy disease. It may be helpful for you and theraputic for me.

God Bless.

HI

PostPosted: August 6th, 2003, 11:44 am
by KERRI
I am sorry to hear that you have that disease, how long have you had it?

You do not have to answer this, but do you think some of us a being hypochondriacs seeing 4, 5, 6 even 15 doctors looking for answers.

Kerri

PostPosted: August 6th, 2003, 12:01 pm
by A_guy_with_ALS
That is a good question. I suspect my first symptoms started about ten years ago although I was not officially diagnosed until this past May. I've had 5 or 6 EMG's in that time frame and it wasn't until August of 2002 that I had an abnormal EMG. It was only 2 months later when the wheels started falling off.

What were your symptoms

PostPosted: August 6th, 2003, 12:06 pm
by KERRI
A_guy_with_ALS wrote:That is a good question. I suspect my first symptoms started about ten years ago although I was not officially diagnosed until this past May. I've had 5 or 6 EMG's in that time frame and it wasn't until August of 2002 that I had an abnormal EMG. It was only 2 months later when the wheels started falling off.



What kind of symptoms did you have.

Kerri

PostPosted: August 6th, 2003, 12:18 pm
by tlotoxl
A_guy_with_ALS -- I'm sorry to hear about your illness and I hope that the progression of your disease stops, as it does in some, and that a breakthrough will soon bring an effective treatment or cure for ALS.

Kerri - do you really think it's wise for you to p a r t i c i p a t e in this thread? Most of us here are very open to the power of suggestion, and I only see your panic level rising. I'm sure that A_guy_with_ALS is sincere, but on the other hand his anecdotal experience (like feeling that he had 'signs' 10 years before the disease really hit along with previously clean EMGs) is obviously no comfort to anyone here, while it's also quite possible that his case is a rare one .

PostPosted: August 6th, 2003, 12:56 pm
by Dale
THIS IS ONLY MY OPINION

To "A_Guy_with_ALS" - I am truly sorry to hear of your diagnosis.

You mentioned that you've been visiting this site for some time now. As such, I'm sure you are aware that it is for individuals with BFS.

Although I appreciate your offer to share your experiences, I don't believe this bulletin board is the correct venue. Most of us here have been to a Neurologist and have been given a diagnosis of BFS. If I were to develop ALS, I'm sure there are many ALS bb's that I could visit to learn of the disease and of people's experiences such as yours.

Again, I'm truly sorry to hear of your ALS diagnosis.

Sincerely,

Dale

PostPosted: August 6th, 2003, 1:35 pm
by shymedic
I agree with Dale. I'm very sorry to hear of your diagnosis.

Since Carol's posts, I've become VERY wary of stuff I read on the web. This guy may well have als. On the other hand, he may be a troll - who can tell? One thing I DO know that als does not take 10 years to develop. That statement is enough to scare the cr*p out of anyone on this forum and I think can be safely ignored. It would also be exceptional to have so many normal emg's before als is diagnosed. That statement also makes me reluctant to accept this post at face value.

I do not believe that any neurologist would recognise this pattern as being typical of or consistent with the development of als.

Another member mentioned 2 fake deaths on a headache bulletin board. Be selective about what you choose to believe.

shymedic

PostPosted: August 6th, 2003, 1:37 pm
by A_guy_with_ALS
Kerri,

Based on the other posts I am reluctant to answer your question for fear of scaring anyone else. Believe me that is not my intent. Please let me say that I am sorry for any undue anxiety I may have caused.

PostPosted: August 6th, 2003, 2:45 pm
by JohnV
A_guy_with_ALS has asked me to remove him from the forum, as he feels that his comments may cause undue stress amongst those who frequent the AboutBFS website.

PostPosted: August 6th, 2003, 2:50 pm
by Dale
JOHNV -

CAN I NOMINATE KERRI'S NAME FOR THAT LIST??

I'm serious.

Sincerely,

Dale

PostPosted: August 6th, 2003, 3:25 pm
by GrymReeper
Not fair Dale. get off of Kerri.

Thanks Grym

PostPosted: August 6th, 2003, 3:28 pm
by KERRI
Look if all you guys are confident in your BFS that is good, I am just a slow learner.

Kerri

PostPosted: August 6th, 2003, 3:29 pm
by dwl
Yep, Kerri has as much right as anyone to be here. I just wish she would occasionally listen to some of the replies to her posts :-)

PostPosted: August 6th, 2003, 3:33 pm
by JohnV
This topic is closed, I don't want it to degenerate into anything unnecessary. Please remember on both sides of the conversation that the written word is much more open to interpretation than the spoken, and that this is a support community.