Can I ask your thoughts

[jewelchic70]

I was researching the good old internet for information on the progression of ALS and its symptoms.

My Dr has told me that ALS symptoms will be noticably obvious, without question in 3 months from first initial onset of symptoms, without a shed of doubt much more obvious in 6 months. He went on further to comment that after 1 year, you are more or less wheelchair bound.

From the research that I have aquired, I am not finding similar progression stories.

Can you folks help me to understand from your own knowledge or individual experiences if this is truthful. I am not questioning the ALS Dr, I am merely questioning if this is a basic quote that ALS specialists toss out when they want to minimize the fear in patients that they see. I do realize that many people , once the thought of ALS enters their mind, it is difficult letting go. I often wonder if the Drs are half/mouthedly speaking.

I did a search up top but although the question has been asked before, I havent seen a concrete answer.
Thankyou

 

[Al]

Hi jewel. There is no concrete answer to progression. In my case, I've been diagnosed 7 years in Oct. I started using a wheel chair 3 years ago. Can still talk eat and drink. Type 1 finger and still enjoy my wine. That being said I also had a friend pass away 2 weeks ago, only 8 months after diagnosis. George Goodwin who runs the ALS Independence website was diagnosed in 1991 and still can use a walker. Sorry I couldn't be more specific but I think your doc is a pessimist.

AL.

 

[jewelchic70]

So Sorry to hear about your friend. I too, thought what a pessimist at first but the reason I asked is because I have a nearby neighbor who is a neurologist and he has said the same about progression. The wheelchair in a year seems to be thrown about by even the most competant neurologists. I have read some posts here also where the Drs have said the same.

I couldn't help but wonder if the Dr's say this when they feel strong against ALS to help get the very anxious patient on a trail of thought, as to lead them away from ALS and the obsession that they are most likely so familar with.

Thanks for sharing,
Keep enjoying that wine! ( A toast to you and continued slow progression

 

[jewelchic70]

I have no clue why that went through 3x ? Sorry for the repeated posts. When I said Wine, I must've got carried away!

 

[Al]

fixed it. No problem.

AL

 

[trfogey]

As Al suggested, the reason you can't find a concrete answer about the speed of progression is that there isn't one. If we knew more about what causes ALS, we might be able to develop tests to measure certain conditions in the body and develop predictive methods. But we don't have that knowledge or those tests and predictors, so we're stuck with after-the-fact statistical methods that tell us about the past and have very limited predictive capability.

The most famous statistic we have with ALS is the "50% mortality in the first two to five years", which tells us really very little about how fast the disease progresses. Then we hear about Stephen Hawking, who is well into his fifth decade with this disease. As we become more acquainted with the ALS community, we hear about others who have survived ten or more years after diagnosis. But we also begin to hear about the ones that don't finish the first year or the second year, and we find out how futile it is to rely on the statistics for comfort.

Personally, I think the neurologists fall back on answers like that because they are safe without being immensely terrifying. The "wheelchair in a year" is a good attention-getter as to how fast quick progression really can be, without being overly dramatic. And it has the side benefit of making the patient aware of the need for continuous and ongoing planning to help patient support stay ahead of patient need.

Just my $0.02.

 

[jewelchic70]

Thankyou Trfogey. That makes a whole lot of sense. Im glad I asked. Interesting viewpoint.
I think in my humble opinion that when the neurologists have a strong gut feeling that the patient is clearly not dealing with ALS, they will throw out that phrase, wheelchair bound in a year, without hesitation, knowing that individual will highly, unlikely ever find out.
I cant imagine a honest, competant neurologist, especially an ALS specialist commenting this phrase to his patient, after he discusses his possible MND findings.
Seems like a phychological way they deal with the patients that are in the safe zone. I suppose it might make sense with so many still worried after a year with no significant progression and a clean EMG. At one point how does the physician tell a patient their EMG was clean and they dont have ALS when the same patient keeps returning in fear begging for another EMG..
Such a fine line between the truth and a small fib.
Just my mind wondering
Thankyou for your thoughts!