Old 03-23-2006, 01:48 AM #1 (permalink)
ladave's Avatar
Member
 
Join Date: 2006
Posts: 136
ladave is an unknown quantity at this point
ladave ladave is offline
Member
ladave's Avatar
Join Date: 2006
Posts: 136
ladave is an unknown quantity at this point
Default My pulmonary consult

...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!
ladave is offline  
Old 03-23-2006, 02:43 AM #2 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

Hey Dave; Take your luck where you can get it. Great news.
Al.
Al is offline  
Old 03-23-2006, 10:54 AM #3 (permalink)
John1's Avatar
Very Helpful Member
 
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,034
John1 is on a distinguished road
John1 John1 is offline
Very Helpful Member
John1's Avatar
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,034
John1 is on a distinguished road
Default

I would say the fact that you
Quote:
Originally Posted by ladave
...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.
John1 is offline  
Old 03-23-2006, 02:20 PM #4 (permalink)
ladave's Avatar
Member
 
Join Date: 2006
Posts: 136
ladave is an unknown quantity at this point
ladave ladave is offline
Member
ladave's Avatar
Join Date: 2006
Posts: 136
ladave is an unknown quantity at this point
Default

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.
ladave is offline  
Old 03-24-2006, 05:50 PM #5 (permalink)
wewillbeatthis's Avatar
Member
 
Join Date: 2005
Posts: 185
wewillbeatthis is an unknown quantity at this point
wewillbeatthis wewillbeatthis is offline
Member
wewillbeatthis's Avatar
Join Date: 2005
Posts: 185
wewillbeatthis is an unknown quantity at this point
Wink

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
wewillbeatthis is offline  
Old 03-24-2006, 08:43 PM #6 (permalink)
ladave's Avatar
Member
 
Join Date: 2006
Posts: 136
ladave is an unknown quantity at this point
ladave ladave is offline
Member
ladave's Avatar
Join Date: 2006
Posts: 136
ladave is an unknown quantity at this point
Default

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!
ladave is offline  
Old 03-29-2006, 11:21 AM #7 (permalink)
wewillbeatthis's Avatar
Member
 
Join Date: 2005
Posts: 185
wewillbeatthis is an unknown quantity at this point
wewillbeatthis wewillbeatthis is offline
Member
wewillbeatthis's Avatar
Join Date: 2005
Posts: 185
wewillbeatthis is an unknown quantity at this point
Smile

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
wewillbeatthis is offline  
Old 03-29-2006, 11:42 AM #8 (permalink)
Jeannie
Guest
 
Posts: n/a
Jeannie
Guest
Posts: n/a
Default

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.
 
Old 03-31-2006, 12:35 AM #9 (permalink)
ladave's Avatar
Member
 
Join Date: 2006
Posts: 136
ladave is an unknown quantity at this point
ladave ladave is offline
Member
ladave's Avatar
Join Date: 2006
Posts: 136
ladave is an unknown quantity at this point
Default

Quote:
Originally Posted by Jeannie
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".
ladave is offline  
Old 03-31-2006, 06:47 AM #10 (permalink)
Jeannie
Guest
 
Posts: n/a
Jeannie
Guest
Posts: n/a
Default

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
 
Old 03-31-2006, 12:01 PM #11 (permalink)
wewillbeatthis's Avatar
Member
 
Join Date: 2005
Posts: 185
wewillbeatthis is an unknown quantity at this point
wewillbeatthis wewillbeatthis is offline
Member
wewillbeatthis's Avatar
Join Date: 2005
Posts: 185
wewillbeatthis is an unknown quantity at this point
Question

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
wewillbeatthis is offline  
Old 03-31-2006, 12:41 PM #12 (permalink)
ruby ben's Avatar
New Member
 
Join Date: 2006
City: Vancouver (Surrey)
State: B. C.
Country: CA
Diagnosed: 11/2010
Interest: I have been diagnosed with ALS.
Posts: 78
ruby ben is an unknown quantity at this point
ruby ben ruby ben is offline
New Member
ruby ben's Avatar
Join Date: 2006
City: Vancouver (Surrey)
State: B. C.
Country: CA
Diagnosed: 11/2010
Interest: I have been diagnosed with ALS.
Posts: 78
ruby ben is an unknown quantity at this point
Default

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
ruby ben is offline  
Old 03-31-2006, 12:46 PM #13 (permalink)
John1's Avatar
Very Helpful Member
 
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,034
John1 is on a distinguished road
John1 John1 is offline
Very Helpful Member
John1's Avatar
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,034
John1 is on a distinguished road
Default

Hi Ruby,

Mine started as speech difficulties in 1994.

John
John1 is offline  
Old 04-01-2006, 01:54 AM #14 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

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.

Last edited by Al : 04-01-2006 at 01:59 AM
Al is offline  
Old 04-01-2006, 07:35 AM #15 (permalink)
Granny's Avatar
Member
 
Join Date: 2005
Posts: 212
Granny is an unknown quantity at this point
Granny Granny is offline
Member
Granny's Avatar
Join Date: 2005
Posts: 212
Granny is an unknown quantity at this point
Default

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

Tags
als, clinical, diagnosed, diagnosis, fasciculations, fvc, hope, progression, slow progression, symptoms, test


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Pulmonary Visit notme People With ALS - "PALS" 5 08-13-2011 04:15 PM
PEG Consult Next Week LornaDoone General Discussion About ALS/MND 5 01-13-2011 11:19 PM
Feeding tube consult dldred General Discussion About PEG's 15 04-14-2010 08:07 PM
Pulmonary Doctor handinhand General Discussion About ALS/MND 16 11-12-2009 12:27 AM
Questions for Pulmonary Dr. ? handinhand General Discussion About ALS/MND 8 11-08-2009 12:50 PM
PEG consult = disaster lisaann1170 General Discussion About ALS/MND 22 09-24-2009 09:10 PM
Has anyone had pulmonary rehab? Sammantha People With ALS - "PALS" 6 11-14-2008 06:38 PM
Pulmonary Rehab? Sammantha Do I Have ALS? Is This ALS? 5 11-06-2008 10:02 PM
How to prepare for 3rd opinion consult? COlisa General Discussion About ALS/MND 8 07-03-2007 12:23 AM
pulmonary dsmode General Discussion About ALS/MND 8 09-30-2005 02:32 AM


All times are GMT -5. The time now is 06:27 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016