Why is this Forum Here?

[johnnyliverpool1]

its those who are advised by those who know on here....., that there symptoms do not fit an als diagnosed, who refuse to accept such advice, who end up getting irritated replies..and quite right too.........sometimes a sharp word or two does em good..........and besides those on here like to advise and help.........johnny

 

[johnnyliverpool1]

just reread my post above....it dont make sense , like that joker said, i am thick....johnny

 

[seaside]

in my earlier post I used the number 6 and a few were quick to jump in to call for a higher count, but no one questioned the number 2000 even though both numbers were very vague estimates, not even estimates just random guesses. My point wasn't about statistics but about the rarity of a diagnosis. Suppose there was a forum called "did I win the lotto?" And people would post a thread stating these are my numbers. Did I win? And most of the time the answer is going to be no. is that so different than the posts of dihals? I don't think so. Now, feel free to call the comparison of winning the lottery and receiving a diagnosis distasteful and offensive to show my point is still unclear.

 

[Tokahfang]

"Do I have ALS?" as a forum does have real and important functions, even amidst the frustrations.

1. A few folks that come need to know what kind of doctor to be pointed at so that they can start working towards health.

2. Anxiety, both general and health anxiety, are conditions that cause serious life problems. For those whose anxiety concentrates on fears of ALS, there is a donut hole in the medical support structure. The neurologist deals with the physical health, but has no time and little patience for dealing with the emotional response to symptoms. The psychiatrist/ologist in the equation has a little more time, much more patience, but most have not even our layman's basic knowledge of the signs that something isn't ALS or any MND. Oftentimes, for those that do follow up on the mental health side of things, they are sent back to a neuro over a benign symptom due to the psych's own worry. Those that fall through that donut hole end up here or at the BFS boards, but they have to be willing to consider they have BFS to get to the latter. That isn't instantaneous.

3. For those who aren't struggling with health anxiety, the pages and pages of worries that lead no where assure them that tons of people have had their symptoms and are still doing fine. Most of these folks never even post, but they are part of the hundreds viewing at this moment.

4. It allows the moderators to not have to delete a zillion posts that would be offtopic for their forum.

 

[kiwisally]

6, 21, 3, 11, 5, 4 Did I win Joe? Nailed it mate.

Tokahfang, can I add one that seems to be consistent though the players change like the wind.

6. Provides a platform for a few, less than 6 (now we can argue that estimate as well to divert attention for the real point), to endlessly play doctor to those any and all legitimate medical professional won't indulgent in such a fashion.

 

[Tokahfang]

I think that would be point 5, but sure.

 

[kiwisally]

Pretty sure it's number 6... that when used everyone seems to focus on and miss the point over.

 

[Clearwater AL]

I would never argue the basic fact that ALS is a rare disease. Maybe the number 6 applies to this Forum. I posted previously there are over 80 ALS Clinics and Centers just in the United States. If each saw just 5 patients a day, times 5 days a week, times 50 working weeks a year, times 80... that's 100,000 people. And... it often takes several weeks to get a 1st appointment. Some of these clinics only see ALS and PLS patients. Yes, others see MNDs too. These clinics and centers are staffed with some pretty expensive people. Three or four patients a week wouldn't make ends meet. I certainly do not wish to argue with any post above... I think the old published number of 5,000 new cases a year has risen.

 

[ottawa girl]

Al,

That's a good point, but I know that "my clinic" treats other conditions - Mondays are dedicated to ALS clinics. Same is true for the clinic in Montreal. One day per week. So that greatly reduces the total number of patients; if similar set up in the USA - then it explains the wait for appointments.

 

[Clearwater AL]

Elaine, Your point and notation concerning clinics is even better and more thought out than mine. But, I'd still give some to the "Baby Boomers" raising the numbers on all diseases. All we hear in the States is how we Baby Boomers are draining benefit programs.
Just my opinion but I'd still "up' that 5,000 new cases a year. And for MNDs too. Thanks for keeping me straight.

 

[vzandt]

Our clinic is on one day a month.

 

[ottawa girl]

Vzandt

Are you in a large centre? Once a month - maybe what 8-10 patients max seen per month?

Our clinic serves a population of nearly 2 million - spread over a large geographic area. Last count we are 85 PALS attending clinic. Generally once every quarter.

 

[Nikki J]

I also think that the doctors at the ALS centers do a fair number of consults on people who end up not having ALS or other MND. A lot of posters on this sub forum seem to have seen one of more neuromuscular specialists. Also a lot of the doctors are also doing clinical research on an ongoing basis.

 

[Clearwater AL]

Yes, ALS is very rare. Only a very few have ALS. Six out of 2000 on this Forum. At any time there are 25,000+ people living with ALS. Only 25 or so "diagnosed" (or caregivers) with ALS are active on this Forum. PLS is even rarer. I was wrong in my calculations.

 

[vzandt]

Vzandt

Are you in a large centre? Once a month - maybe what 8-10 patients max seen per month?

Our clinic serves a population of nearly 2 million - spread over a large geographic area. Last count we are 85 PALS attending clinic. Generally once every quarter.

I think...last time we went...they saw six patients that day. I just remember my pals told me and I was surprised. I didn't see anyone come or go in four hours. He wanted to go in alone so I sat in the waiting area. Not a person came or went. We live in the northeast.