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ladave

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...was today. After a thorough clinical examination the pulmonologist told me I had no evidence of pulmonary dysfuntion. He referred me for Forced Vital Capacity test to get a baseline. He then told me that in more than 20 years of seeing als patients I was the first he had ever seen with no evidence of even slight pulmonary interference after three years of symptoms. He also noted the amount of strength in my legs and upper body, then said "It looks like you may be one of the lucky ones with very slow progression".

"Lucky ones"? Well, within the context of being diagnosed with ALS, I'll take it. Let's hope the fvc test confirms his observations. Getting "good news" from a doctor after getting this diagnosis is pretty rare, right? I walked out of his office feeling better than I have in some time. So (despite these darn fascics) today was a good day!
 

Al

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Hey Dave; Take your luck where you can get it. Great news.
Al.
 

John1

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I would say the fact that you
ladave said:
...walked out of his office...
was remarkable in itself.

In my case I had no pulmonary indications for 6 years after symptom onset but I do have them now.
 

ladave

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John,

With the spread of fasciculations to my legs, I find myself testing my leg strength every day, and at the end of the day, saying a silent prayer of thanks for another day on my feet. I don't know how long this will last but you can bet I'm not taking little things like this for granted anymore.
 

wewillbeatthis

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Dave,

Great news whatever your doing or not doing keep it up.

What have your FVC's been before. It is so hard to figure that test out. They take down your weight, height, sex and a few other things and then they give you a percentage. However that percentage is a % of what the norm is. So how do you know how your doing. Then they take the one that they put on your finger I think it is an oxygen blood test or something like that. I am so confused... Any thoughts on how to figure out your results on these test?

Jen
 

ladave

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Jen,

I've never had any sort of lung function test before so I have no idea how they base their calculations. The main reason the pulmonologist gave for referring me to have the test done at this time is to "get a baseline". So I presume they'll measure my subsequent tests against this one to see if I'm stable or losing ground.

As for what I'm doing- not a lot really. I stopped the diet sodas, am eating more organically, am taking selected supplements and Rilutek, and getting physical therapy. Of course, I progressed slowly over the previous three years following onset of symptoms when I was consuming an average of two litres of diet coke a day and alternating my meals between Panda Express, Jack in the Box and Kentucky Fried Chicken. I'd like to think that the changes I've made will slow my progression to a crawl. But what I really think is this is random, some people just progress faster than others. I drew the short straw on getting ALS, maybe I'll draw the long straw and have slow progression over many years. One thing for sure, I'm no longer taking each day for granted!
 

wewillbeatthis

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Hi Dave,

Thanks for the response. I am sorry that I have not written back in a few days. I am thinking along the same lines in just about everything you said:) If you have to have this disease then the slow progression is something to be thankful for.

As for the pulmonary test this was also my dads first and I guess we will have to wait and see how the others go as time goes on. I hope to GOD that they all stay good.

This progression is strange. Dad is just having trouble walking his upper body is great. On occasion when he is real stressed and or tired he tends to speak slower. Other then this he is doing great... I pray that if he must have this his progression is a crawl as well...

Good luck to you stay in touch and GOD BLESS :)

Jen
 
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Jeannie

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Good news, Dave, what was your fvc % ? mines usually between 72% & 82% depends if I'm having a good day.

I'm due soon for another sleep study, I feel my fvc maybe lower as my posture seems weaker, we will see on the day,eh.
 

ladave

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Jeannie said:
Good news, Dave, what was your fvc % ? mines usually between 72% & 82% depends if I'm having a good day.

I'm due soon for another sleep study, I feel my fvc maybe lower as my posture seems weaker, we will see on the day,eh.

Hi Jeannie,

I delayed responding because last week was the consult, the tests were today. FVC was 93 sitting up, 84 lying down. The tech said both readings were in the normal range but I should talk to the doc if I am concerned about the difference between the two.

They also gave me another test, I don't know what it is called, perhaps you guys do? He had me cover my nose, breathe in, after which he covered the tube to see how hard I could breathe out against the pressure. This was then repeated with me sucking in against the pressure. I blew out at over 150 both sitting up and lying down (he said the meter doesn't even measure above 150, so I guess I passed that one pretty well!) I sucked in at 148 sitting up, 128 lying down.

So I guess all in all I'm pretty happy about the results. Having never had a test like this before, I don't know if the 10% difference between sitting up and lying down is als-related or just normal for me, or if there is even some non-als issue. Whatever, until they tell me otherwise, I'll assume it is "all systems go".
 
J

Jeannie

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Hi Dave, dang you are doing good, I cant remember what the test is called which you mentioned, Ive had the same test (cant remember the %) but in that test the results were higher than my fvc.

FVC lying down is usually lower than sitting up in pals & non-pals, guess what? my fvc was higher lying down lol which somewhat baffled the Dr's.

What ever your doing, keep it up :-D
 

wewillbeatthis

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Great News Dave Keep up the GREAT WORK!

Jen

Share your secreat what types of exercise and medications, supplements do you take?

Also if you don't mind me asking and sorry if you answered this already but how old are you, and how long have you had ALS?

Jen
 

ruby ben

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Good news Dave. I THINK I am in your category - symptoms started 3 yrs ago. How long ago did yours start?

Also - John1, Al, Richard and Granny - if your don't mind my asking, how long ago did your symptoms start?

Still getting the hang of this................ruby from vancouver
 

John1

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Hi Ruby,

Mine started as speech difficulties in 1994.

John
 

Al

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Hi Ruby. My symptoms started in Dec.2002 with fasciculations in my right leg. By oct of 2003 at diagnosed they were pretty well everywhere.
 
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Granny

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Hi Ruby,
My symptoms started with slurred speech in the fall of 2003. I was diagnosed in April of 2004.
Granny (Leah)
 
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