Sorry must post..

[4rhl1981]

I fully understand that this is an ALS Forum, and I understand some are DX with ALS and others have no DX, now my problem lys here. People on this forum that are DX with ALS are not being compassionate to other that have similar symptoms or are seeking knowledge because they are not sure what the symptoms of ALS are, even though they may or may not have some of the same symptoms. But to tell some they don't have ALS to consider them self lucky and to get on with they're life is unacceptable! There are many disease and symptom that are just as bad if not worse then ALS, that have the same end result as ALS (complete paralyzation of all muscle, including the ones that let you breath!) that have no names or DX or that have DX equally as bad as ALS. At least for some with ALS DX they know what they have and what they are dealing with, unlike the unfortunate and their family who just know that they are going to die of an unknown illness. So in simple be compassionate to your fellow man/ woman and really think how you would feel if you are dying and no one knows of what!:!: I am really thankful to have this forum, but I encourage its members to open its heart and mind to those not just with ALS but any unknown or know decease that may mimic the symptoms of ALS or other similar neurological disorders that may not have a forum.
Thank you and so very sincere;
4rhl1981 (4 my Grandfather Raoul Henri Labrie died 1981 of Atypical ALS)
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[SteveS]

I really hope I am not speaking out of school on this (and if I am please delete post) but I feel a need to reply to this OP. I beg to differ on the fact that since I have been coming to this forum and reading and researching I have found everyone to be more than compassionate in dealing with anyone that posts a comment or question. Since I am not aware of any medical specialists on this forum except for a few that seem to have extensive medical training or background no one here can diagnose your symptoms for you. The best advice I have seen on this forum is to seek medical attention and get a diagnosed for what ails you. You could be doing yourself a serious disservice if you are looking for confirmation for what you believe to be ALS or related by the folks that post here. (no disrespect to anyone here as I already stated everyone is a good bunch of people but unless you are a clairvoyant or a Neurologist that can diagnose over the internet....) It took us four steps and a year of tests and appointments to get my wifes diagnosed, her GP, a general Neurologist in Victoria to a GBS/CIDP specialist to an ALS specialist at GF Strong in Vancouver who gave us the diagnosed of ALS almost 1 year to the day from where we started. Maybe it takes longer for some or less, I am not sure except in our case. We were very persistent with everyone we saw and pushed every step of the way and everyone as far as I am aware were top in their field and I am pretty confident with their findings, recommendations and diagnoses. If you are not confident with the way your current specialist is handling your case then seek another until you are comfortable with their level of expertise and ability to make a correct diagnoses and listen to him or her. I found it harsh that you need to complain about people telling you what you don't want to hear and to not look for a diagnoses here but with a doctor. Read more of the board and you will find more compassion that you can shake a stick at.

/end rant
/disengage soapbox

 

[Al]

I just spent 15 minutes typing a reply and bumped my mouse and lost the whole darn thing. Point was. Everybody gets an opinion here as long as its civil and not hurtful. Some may be more sensitive than others so try to keep that in mind. I think the problem lies with some people that need some sort of validation or something. I can't figure out what it is. You tell them to see a doc and they say, I've seen 3 and Don't believe any of them. So what are we supposed to say? Some people do say there, there you'll be ok. Others including myself sometimes feel the need to slap them in the side of the head and say, live with it. If it gets worse, find a doctor you trust and go from there but don't be consumed by needing a diagnosis from the internet. Once again this is only my opinion and I could be wrong.

AL.

 

[CindyM]

We talked about this. No need to resurrect the topic. We decided that the fear of knowing our symptoms could develop into a bad condition is not the same as living with an actual disease.

Not that we don't support those who live with the possibility. (I, for example, appreciate the support given to me as a non-PAL.)

But the two realities are different, and call for different types of support. 'Nough said.

 

[lerg62]

This site is a life line for me. I don’t post very much but read everyday and I have not come across one single person who is not compassionate of everyone ALS Dx or no Dx. I do not have ALS, my brother does and the people here are my heroes. I can not begin to tell you what I have learned; things you can not get from a Doctor., a book, or on line have helped me help my brother. These people are living with this terrible disease day in and day out and come on this site and give freely of themselves to help others. People who come to this site are always treated compassionately and my bet is that the people living and suffering with this disease know much more then the doctors who DX'd them!

 

[CindyM]

Amen to that! Al says he is teaching his GP a few things about the disease. Goes to prove that when collective minds focus upon one thing, the body of knowledge grows.

 

[ZenArcher]

I wonder, how many of the people that come here and ask the same questions that have been asked a thousand times before then take the time to advocate for the patients or donate to ALSA?

I wonder, how many of the people that come here and ask questions of those that type with one finger or with eye tracking software then go on to teach even one other person about MND of any flavor?

I wonder, why it is that we speak of the fear that those who are undiagnosed experience but don't acknowledge the fear of those who have been diagnosed?

I wonder, why 6,000 people are diagnosed with ALS every year in the U.S. but less than a thousand show up at DC to advocate?

I wonder, why with over 100,000 people in the U.S. personally touched by MND in the last 5 years the best we can do is an Angela Lansbury public service announcement that I've never seen on air?

I wonder, why people expect compassion when in many cases they can't show the common courtesy of a search or the consideration to spread the word?

 

[Al]

Very well put Jeff. Would have said it myself but my 1 typing finger is sore.
Thank you.

AL.

 

[olly]

lerg62
i had to smile reading your post,i am so glad you found this forum and it helps you and your brother.
you must be truly devoted to him to find out all you can to help him.

jeff.
well put,as a rare desease mnd does get left out in the cold with regards to research and awareness.
other well known treatable neurological illnesses like ms and parkinsons get more attention and that is not fair.:-(

my son laughs at my one fingered typing...................but if it gets the job done all is good.:grin:

 

[brendapals]

yes Jeff,

very well stated!
-brenda

 

[ZenArcher]

Al, you can borrow my fingers to speak your mind any time you wish :wink:

 

[strikeout]

Jeff - Great reply and, sadly, most likely true. By the way... very nice shot in the calendar!

 

[ZenArcher]

Thanks, I didn't even know about that until I got the calendar. I blamed my wife but she didn't do it

 

[CindyM]

Jeff- thanks for a great post. Well put, my man.