from time of diagnosis

[Bob R]

Diagnosed with MND on 6/2/15, I will be posting various thoughts/ rantings on this disease.

We have all heard/ read that life expectancy is measured from time of diagnosis. Lucky for me, my doctor was on a 3 month vacation before my diagnosis, so that means I get an extra 3 months to live. Stupid, isn't it ?

Reality must measure time from date of first symptoms, and maybe add a week or two to that. As such, I am now 10 months into it. So why does my doc say I've only had it for 2 months ?

OK, one other misc rant. I'm sure we've all had our neurologist test our strength by using his hands and saying, "push against me" or 'resist while I push your leg, etc". Wouldn't it be neat to have a machine to actually measure the strength of our resistance ? That way, we could all see the progress of the disease, measured accurately over time.

When I was a boy, they had a grip meter in the penny arcade to measure the strength of your grip. Hell, that was 60 years ago. Why ?

 

[Nikki J]

We can all point to many examples of outliers from all the life expectancy numbers. We are all going to live as long as we are meant to and the members of this board show that

Regarding measuring strength I am in a study at my clinic to do exactly that. After I see the neurologist I go to the pt and there is a machine that looks like it belongs in the gym. I push and pull with various muscles and it is hooked into a computer that records pounds of pressure. Each visit is stored so they can immediately compare visits. I think part of the study involves comparing this to the assessment done during my exam

 

[Bob R]

That machine sounds exactly like something that should be in all neurologist's offices. Considering the cost of most medical equipment, this doesn't sound like a huge expense.

Yes, we all have different life expectancies. But using the beginning of symptoms gives us a uniform starting point from which to measure duration and give a more accurate prognosis.

Thanks for reading and responding.

 

[MaxEidswick]

>Reality must measure time from date of first symptoms, and maybe add a week or two to that. As such, I am now 10 months into it. So why does my doc say I've only had it for 2 months ?

dump the doc.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral

to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease)

experienced!




Max - Sunday, July 26, 2015 10:21:05 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Jeanau]

Bob, I was diagnosed on last New Year's Eve. After doing his own EMG, administering a few other tests, and talking about when my symptoms first appeared, the doctor told me that I probably had ALS for about 2-2 1/2 years. I was diagnosed on New Year's Eve...but that wasn't when my ALS began or manifested itself in visible changes. Date of diagnosis isn't the date of onset. Good luck on your journey and welcome!
Audrey

 

[Atsugi]

Bob, I think the life expectancy figure is a superficial statistic that doesn't have relevance at the individual level. Most PALS die because they can't expel CO2 from the lungs. So a more relevant measurement is not limb muscle strength, but your ability to exhale carbon dioxide. If your progression is slow, your pulmonologist can measure your FVC from time to time and give an educated wild-assed guess at life expectation.

Even then, the pulmo's WAG is only part of the equation. It's equally important, in my humble view, to see how fast the limbs are failing. This might give insight into how soon the lungs will get involved.

But, of course, ventilation is available--both external (mask) and invasive (tube).

Some of us hope to live as long as possible, and some of us want to avoid living totally locked in. Medical science can keep your body and brain alive longer, but some don't want a life without communication. So then, ventilation is not everyone's choice.

For instance, my wife was hoping for 10 years. She got 8 months. She didn't want to live locked in, so she refused all tubes, feeding and air, except for a catheter when her body had completely failed. Her eyes were locked in for one day before her breathing gave out. There was truly no way of communicating when she couldn't blink.

We've seen PALS live long on a plateau and then degrade unexpectedly. Life expectancy just isn't a straight line.

In short, I don't put much stock in the statistics. I suggest that PALS live day-to-day, and worry as little as possible about the future that we can't control anyway. Also I recommend that CALS plan for the future, for they will need to carry on the family business after their PALS is gone.

I hope this gives food for thought. Please feel free to rant. Don't forget to use your blog.

--Mike

 

[Barbie]

well said Mike

 

[tripete]

There are so many factors involved, I think the main one is how did it present. Some are bulbar, some are limb and for me respiratory. Each type of onset, and MANY other factors will play into our life expectancy.

That said, your point about when it begins, and strength testing is something I have both noted and agree with. You will find (and I am sure you have) that there are so many medical discrepancies, contradictions and a lack of understanding that accompany this disease. It often seems like they know nothing, have given up and are barking down all the wrong trees.

This forum has offered me more information and support than any other avenue. It is hard to except but our days are numbered and it will end soon and be miserable. We must do the best we can to comfort one another and our loved ones.

 

[affected]

What if you don't know when symptoms started?

My Chris had muscle wastage in his shoulders more than 2 years before his first FTD symptoms and then bulbar symptoms began. The wastage was quite severe so it must have started some time before then but who knows.

No decent neurologist will attempt to express life expectancy.

A fairly large percentage of PALS go faster because of aspiration pneumonia.

 

[chally]

well said mike and now what's a blog and how do i use one. i told ya all the computer is a new world to me but this dog can learn. lay it on me. chally

 

[Atsugi]

Chally, look at the top of this page and you'll see a blue bar with menu items on it.
The second menu item says "blogs."
Click on it and it will drop down.
Click on "Your Blog" and begin to write whatever is on your mind. It's a great place to unload any thoughts you have, and share with people anything you want, even stuff that is not ALS-related.