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Question truthfulness of latest ALS claims

PostPosted: August 8th, 2003, 2:50 am
by SusanSid
Having been involved in this website for about 20 months, I feel the need to mention to newcomers, and members who worry easily...like so many of us, some of my thoughts and observations about some current postings.
If you read most of the postings on this website, they are questions that we have all had at one time or another about BFS, especially in the beginning. Some of us continue to have doubts believing our diagnosis of BFS, and continue to worry.
Lately, we have had a two incidences where there have been 2 claims of ALS...the first I've ever seen on this website. The first claim we have all just about agreed that it was fake and the person is sadly in need of attention and has more serious emotional problems beside BFS. A relief to us all, but created a huge stir.
The second was a newcomer claiming to have ALS and willing to share. Perhaps he has it, I am so sorry if that is the case. The truth of the matter is that this person is new, says his symptoms began 10 years ago (goes against every piece of medical research available) and suddenly wants to share his expierience with us...what the heck for? This is a BFS website, not an ALS website, God knows there are many websites where his energy is needed.
I am calling it the way I see it. Be careful what you believe on the internet, take time to get to know the website and the people that post and I sadly do not believe the latest claims of having ALS. I've been doing this too long to smell fake when I see it.
Bottom line, don't focus on the negative, share your concerns and fears, but listen to what others tell you, process it, look at the logic and listen to what your doctor tells you (I know they are not all perfect nor do they all have the greatest bedside manner), but if you are told it's BFS, believe it and get on with your life.
The symptoms vary, are intense, can be frightening and create doubt. It is BFS, you will not die, yes it's annoying, just move on and learn what makes it better or worse.
This is a terrific website with many people who speak the truth. Lets continue to keep it this way.
Sue

PostPosted: August 8th, 2003, 8:18 pm
by Brian_B
very well said

PostPosted: September 3rd, 2003, 1:00 am
by Arron
Susansid, I love you :lol: That was an awesome post! And HOW true it is!

Even in one of those person's cases you mentioned... the doctor was a quack and misdiagnoised the patient, and I of course, got slammed for it.

I've said it before and I'll say iot again... NOT ONE PERSON has gone on to develop ALS from BFS, OR has gone on to have worse symptoms without the REAL presence of REAL weakness and/or bad EMG's. No matter how much people want to slam me, call me names, say I'm a power freak or pompus (yeah, whatever :roll: ) or whatever else they want to say or call me. All I can say is that the facts are what they are... oh yeah, I was slammed for saying the word "fact" in earlier posts by people as well, so I guess I'd better not use that word anymore either :roll:

Again, great post Susan! You go girl :o