Old 05-17-2018, 10:26 AM #1 (permalink)
Member
 
Join Date: 2017
City: ZAGREB
State: Croatia
Country: HR
Diagnosed: 09/2017
Interest: I have been diagnosed with ALS.
Posts: 147
jethro is on a distinguished road
jethro jethro is online now
Member
Join Date: 2017
City: ZAGREB
State: Croatia
Country: HR
Diagnosed: 09/2017
Interest: I have been diagnosed with ALS.
Posts: 147
jethro is on a distinguished road
Default Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progressive

can not say when my als started. i had dizzines and stil have it and that's why i visited neurologist.
i felt something is wrong in spring 2015., something with balance. tripping, falling etc. did all tests by 06 /2016 and there were no signs at all. emng ok, all als tests ok, even i felt bad.
when i barely walk to make mri, 500m, i was affraid of ms. it was in 06/17. mri was good, never heard of als then.
in 09/17 emng was disaster, problems with legs and right hand. diagnose: als.
now i am in hospital, doc asked me when i got als, didnt know what to say, so he couldnt conclude anything.
i can walk 200 meters at once, and noone can predict when i will use wheelchair.
am i fast or slow according to medical prediction with lifespan 3-5 years? i know that many people are diagnosed in one year, and they pass away next year, but they might have it for years...
jethro is online now  
Old 05-17-2018, 10:51 AM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,358
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,358
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

There are people who take a long time to be diagnosed yes but a long time from symptom onset to diagnosis correlates with slower progression.

I have had a lot of friends with SOD1 A4v which is fast. I have seen them go from fine to dead in 12-18 months. No one knows when ALS starts before symptoms show but the people I know who died fast were diagnosed quickly after symptoms began
Nikki J is offline  
Old 05-17-2018, 02:43 PM #3 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,778
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,778
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

It's a bit of a moot point really.

Progression can speed up and slow down or even plateau without any warning and often without any apparent reason.

My Chris had signs of ALS in his shoulders, but we didn't know what it was, 3 years before his diagnosis. He started obvious signs of bulbar issues that went on for 6 months before I said we needed to see a doctor. It took 6 months to then get a diagnosis.

So there was a slow insidious process happening. He was gone 11 months after diagnosis as it took off like a whirlwind. What may have started slow became rapid.

Comparing won't really tell what will happen to you. When you are asked when you got ALS, all you need to say is when the obvious symptoms started. Pinpointing anything more detailed further back won't really make a difference.

Even how quickly you stop walking doesn't necessarily say anything about how long you will live, as some people stop walking but it is years before their breathing becomes affected.

That lifespan you quote is an average. It is a good guide over large numbers of people, but the length of time each individual lives with this depends on so many variables, even besides how fast or slow progression is. Nutrition and calories, not falling, conserving energy can all end up impacting greatly, so it gets really complicated. I hope what I've said makes sense?

I hope you can find ways to enjoy and live what days you do have.
affected is offline  
The Following 2 Users Say Thank You to affected For This Useful Post:
Tedstehr (05-18-2018), wishmobbing (05-17-2018)
Old 05-17-2018, 06:59 PM #4 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,790
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is online now
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,790
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

My local neuro, who is a friend, thinks mine dates as far back as 2012 when I twisted my ankle for no apparent reason. That's when I started not being able to run as far or as fast. The following year I fell running but didn't think anything of it except it was time to start speed walking instead of running. The next year (2014) is when I started getting cramps and twitches in my left foot. Same neuro noticed brisk reflexes in my left leg. Still not worried about ALS. He insisted he do an EMG. After seeing his results he referred me to Mayo.

So, if it REALLY started in 2012 and I'm still walking (not far but without limp) then I guess I qualify as a slow progression.

Progression can slow down, speed up, or even plateau.

My FVC was below 80 in 2014 but my MIP and MEP were way above normal. They still are above normal.

Not much value in comparison for this disease. It seems to take what it wants when it wants.

A PALS from group died suddenly. He was still walking and talking and only needed BiPAP at night. He died of respiratory arrest while sleeping.
KimT is online now  
Old 05-17-2018, 08:02 PM #5 (permalink)
KarenNWendyn's Avatar
Senior Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 931
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Senior Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 931
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

We know it takes alot of neuron loss before a person notices weakness. So nobody really knows when their first motor neuron died unexpectedly, which would technically be the onset of the disease.

As motor neurons die off, the percentage of viable remaining neurons gets smaller and smaller. At some point, weakness becomes noticeable. Over time, there are fewer remaining neurons, so as more die off, it seems logical that it would appear progression is speeding up.
KarenNWendyn is offline  
The Following 3 Users Say Thank You to KarenNWendyn For This Useful Post:
Statius@ (05-24-2018), Tedstehr (05-18-2018), wishmobbing (05-18-2018)
Old 05-17-2018, 08:06 PM #6 (permalink)
KarenNWendyn's Avatar
Senior Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 931
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Senior Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 931
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

Quote:
Originally Posted by KimT View Post
A PALS from group died suddenly. He was still walking and talking and only needed BiPAP at night. He died of respiratory arrest while sleeping.
Opinions will surely vary on this. Given that i have this progressive disease for which there is currently no cure, I would love to go out quickly in my sleep before becoming fully paralyzed. Just my opinion. Perhaps a topic for another thread.....
KarenNWendyn is offline  
The Following 4 Users Say Thank You to KarenNWendyn For This Useful Post:
affected (05-18-2018), Chincoteaguer (05-18-2018), Statius@ (05-18-2018), Tedstehr (05-18-2018)
Old 05-18-2018, 12:37 AM #7 (permalink)
Tedstehr's Avatar
Member
 
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 163
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Tedstehr Tedstehr is offline
Member
Tedstehr's Avatar
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 163
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

Heartily agree with postings on this thread. I used to focus on progression as we all do at first. But, as stated, you could have a super slow progression that speeds up for no specific reason, or like Karen says your remaining neurons hit a tipping point and you are on your ass. Literally and figuratively. And really, we are all in a car heading for a cliff. Does it really matter if your car is going a bit slower? Enjoy the ride as much as you can, and maybe don't look out the front window. And to stretch this analogy a bit further, everyone on this earth is in a car heading for a cliff. We just happened to have read the road map so we know what is coming.

The creator of this analogy would like to thank "Thelma and Louise" for their help with this analogy. "Thelma and Louise" is the sole property of MGM Pictures and may not be cited in analogies unless written permission is obtained from MGM Pictures
Tedstehr is offline  
The Following 3 Users Say Thank You to Tedstehr For This Useful Post:
KarenNWendyn (05-18-2018), sassy (05-18-2018), wishmobbing (05-18-2018)
Old 05-18-2018, 02:20 AM #8 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,985
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,985
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

Jethro,


Three years in, if your intuition is correct, you seem to be doing pretty well. As others have pointed out, progression is not linear and sometimes the train seems to fall off the track for no reason. Live fully until you can't. Then live anyway until you don't want to. You are still the conductor for the trip even when your body lags.


Best,
Laurie
lgelb is offline  
The Following 3 Users Say Thank You to lgelb For This Useful Post:
KarenNWendyn (05-18-2018), KimT (05-18-2018), MarieLaure (05-18-2018)
Old 05-18-2018, 06:57 AM #9 (permalink)
Nuts's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,398
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Nuts Nuts is offline
Extremely Helpful Member

Nuts's Avatar
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,398
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

Jethrio, you have some spot on responses here. Please keep in mind that the 3 to 5 year average is from diagnosis, not the date symptoms started (since, as you have already experienced, it's impossible to determine when the disease started taking its toll).

Prepare ahead of time and then live. Once you have put equipment/housing modifications, etc into place, try to focus on today and live it for all it's worth.

My husband and I have made some incredible memories while dealing with his progression. At 4 years post diagnosis, he is now trached, vented, and on a feeding tube. We're now trying to figure out how to maximize the time we have left.

He was a slow progressor at first, but some of his activities and injuries have no doubt hastened things. That's ok with him--he's always said that the quality of his life is more important to him than how long he lives.

Best of luck to you. You have found the best place to share and ask questions.

Becky
Nuts is offline  
Thanks from
affected (05-18-2018)
Old 05-19-2018, 11:21 PM #10 (permalink)
Ladybird59's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Palm beach gardens
State: Fl
Country: US
Diagnosed: 02/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 2
Ladybird59 is on a distinguished road
Ladybird59 Ladybird59 is offline
New Member (Say Hi)
Ladybird59's Avatar
Join Date: 2018
City: Palm beach gardens
State: Fl
Country: US
Diagnosed: 02/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 2
Ladybird59 is on a distinguished road
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

This thread has been most helpful! My brother started his speech becoming more raspy, a 1 leg feeling heavy, tripping and experiencing a few falls like his leg was giving out on him. That began early 2016. It took almost 8 months and two doctors to finally diagnose that he had ALS. Now he is almost incapable of getting out of a wheelchair and grab onto a walker. He is such a fighter. As for his voice, the only person who can grasp what he is trying to say is his wife who has taken on the role of care provider. He gets so frustrated and angry when not understood, still fights using a writing tablet to jot down a few words so we can make conversation easier. Lovingly, we embrace the challenges that continue to come his way but as his sister (we are so close), the pain of seeing him fight this and also his own sadness is killing me inside. Are there any ALS counselling groups for family members in Florida to be able to let out all the sorrow inside. My apologies if this is the wrong thread to be in.... thank you for allowing me to be here. Ladybird
Ladybird59 is offline  
Old 05-20-2018, 06:01 PM #11 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,985
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,985
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

Ladybird,

Please feel free to start your own thread in the caregivers section, so we can get to know you.

You can find a list of FL support groups here.

Best,
Laurie
lgelb is offline  
Old 05-29-2018, 09:37 AM #12 (permalink)
Bdoftorrey's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Cape Coral
State: Fl
Country: US
Diagnosed: 01/2018
Interest: I have been diagnosed with ALS.
Posts: 1
Bdoftorrey is on a distinguished road
Bdoftorrey Bdoftorrey is offline
New Member (Say Hi)
Bdoftorrey's Avatar
Join Date: 2018
City: Cape Coral
State: Fl
Country: US
Diagnosed: 01/2018
Interest: I have been diagnosed with ALS.
Posts: 1
Bdoftorrey is on a distinguished road
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

Best of luck Jethro. I have seen my symptoms since about 2015 with muscle atrophy in left hand. It took a year after I finally went to specialists. I was officially diagnosed with slow onset ALS 6 months ago. So far just my left hand/arm only obvious function much affected, I too would really want to know how the disease will progress with me. For now just living my life and hoping for a tolerable future.
Bdoftorrey is offline  
Thanks from
jethro (05-30-2018)
Old 05-30-2018, 02:40 PM #13 (permalink)
Member
 
Join Date: 2017
City: ZAGREB
State: Croatia
Country: HR
Diagnosed: 09/2017
Interest: I have been diagnosed with ALS.
Posts: 147
jethro is on a distinguished road
jethro jethro is online now
Member
Join Date: 2017
City: ZAGREB
State: Croatia
Country: HR
Diagnosed: 09/2017
Interest: I have been diagnosed with ALS.
Posts: 147
jethro is on a distinguished road
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

yesterday was exactly 8 months since i made emng which was disaster, so i did it again. i'm trying to find expression by numbers how much i deteriorated or maybe reached plateau. neuro says:
"no way to interpret emng to say that, clinical impression is most important!" i couldnt understand that!

emng i've done yesterday was (descriptive translation, but i hope you'll understand):
1. left side EXACTLY the same
2. right side: "we can see/notice small deterioration compared to emng done 8 months ago, app 5-10%, depends which muscle.
i have very heavy damage of motor neuron in right foot muscles and right calf, heavy damage of MN left foot (i can rise up on left toes many times) and frontal left and right tibialis and quadriceps, same as muscles right arm and right tenar, moderate in muscles left tenar, both hipotenars and left hand (above elbow).
"We can say that measurement compared to results primary indicates LMD"
so, left side is plateau (same emng like it was 8 months before), right side mild deteriorate. made by doctor, but not neurologyst.
by yesterday, i thought everythin jus like @karen said, but there's one strange thing:
a) do some neurons die, some not die at the same time
or
b)ALL neurons in that part of the body loose function step by step in (let's say) same way, but with delay.
a) doesnt sounds logical: are there some "chosen" neurons?

fast progression is a kind of switch. guy in phase III trial have fast ("flying") progression. he hadnt time to lose muscles. his biceps is just like my had (which isn't small, believe me!). he couldnt move before implant in medula spinalis. today he got second (of three) injections. he is doing fine, that a point.
are we smarter?
no.
no comparison, nothing is predictable, (as my neuro said): numbers are not relevant to estimate status - progression, plateau or (dontwantosay), just clinical impression.
i think fog we are in is a thicker.
i still walk, app 200 meters, sometimes even 500 (at once) without any help tool. doc explaind me my dizziness:
YOU CONCENTRATE TO EVERY STEP YOU TAKE AND THAT TAKES ENERGY. SOMETHING THAT IS NORMAL TO OTHERS, IS A PROJECT PLAN FOR YOU. BRAIN MAKES YOU TIRED"
still go to gym. dont see myself helpless depending on... um... i have noone, i'm living alone. i'm on myself and that obviously keeps me erected.
i'm in a "game" 100%. all neurologysts in country know me.
i have much to say about kim's als, but this is not appropriate place.

Last edited by jethro : 05-30-2018 at 03:07 PM
jethro is online now  
Old 05-30-2018, 05:11 PM #14 (permalink)
KarenNWendyn's Avatar
Senior Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 931
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Senior Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 931
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Can not say to dr. when my ALS started, so he cant say if i'm slow/fast progress

Jethro, you say you don’t understand why your doctor feels clinical impression is more important than EMG for understanding disease progression.

As a retired MD physician (Internal Medicine and Rheumatology), I can tell you that the history and physical exam are the most important tools for making a diagnosis and also for assessing disease activity and progression for just about any condition.

Tests like an EMG are secondary and serve mainly to augment the impression created by the history and physical exam. This is why I have told people posting in the DIHALS section that if your neuro exam is normal, your doc can’t diagnose ALS even if there are changes on EMG.

Physicians are taught to treat the patient, not the tests. Tests only make sense if interpreted in the context of the history and physical.

In ALS, history and physical are most useful for following disease progression. Pulmonary function tests are also useful. EMG is more important for helping make (or rule out) a diagnosis of ALS. It may also be important as a research tool. But otherwise, once a diagnosis of ALS is established, it probably doesn’t have much usefulness in assessing progression.
KarenNWendyn is offline  
The Following 2 Users Say Thank You to KarenNWendyn For This Useful Post:
affected (05-30-2018), jethro (05-30-2018)
Closed Thread

Tags
als, balance, diagnose, diagnosed, falling, medical, mri, neurologist, problems, tests, wheelchair, wrong


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
Lyme/ALS Progressive Bulbar Palsy/Primary Lateral Sclerosis/Progressive Pseudobulbar dralmiller Lyme Disease Diagnosis 0 10-16-2014 08:28 AM
ALS Progressive Bulbar Palsy/Primary Lateral Sclerosis/Progressive Pseudobulbar Palsy sanddmtta Do I Have ALS? Is This ALS? 3 10-16-2014 05:14 AM
Progressive weakness Mom75 Do I Have ALS? Is This ALS? 6 03-26-2011 10:40 PM
progressive symptoms amyecpa Do I Have ALS? Is This ALS? 5 07-03-2010 09:00 PM
"So Much So Fast" PBS to air So Much So Fast - April 3, 2007 AlmasDaddy Event Announcements 18 07-12-2007 09:13 PM


All times are GMT -5. The time now is 02:22 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