Old 02-20-2018, 12:47 PM #1 (permalink)
karzy81's Avatar
New Member
 
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
karzy81 karzy81 is offline
New Member
karzy81's Avatar
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
Default Waiting Game! Very Frustrating

My father was recently (October 2017) “told” by two separate neurologists that he has ALS. He has frequent fasiculations in his legs, arms and shoulders, and his legs are very weak which has resulted in many falls over the past few months, there has yet to be any breathing or swallowing issues. We had our first meeting with the neurologist at the als clinic this past December where more detailed tests were performed as well as an mri was ordered. We returned to the clinic where more tests were performed. On that same day the neurologist showed us a picture of my dads spine and said that he has severe spinal stenosis (no fluid around the spine) and they want to do another mri, that is more detailed on the spine. Apparently he has both lumbar and cervical spinal stenosis. When we learned of his spinal stenosis we were somewhat relieved however i have since become discouraged and I believe that he could have both. Does anyone have any experience with this? Anything would be helpful.
karzy81 is offline  
Old 02-20-2018, 02:34 PM #2 (permalink)
wishmobbing's Avatar
Senior Member
 
Join Date: 2017
City: Stuttgart
State: Germany
Country: DE
Diagnosed: 07/2017
Interest: I lost a loved one to ALS/MND.
Posts: 595
wishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to behold
wishmobbing wishmobbing is offline
Senior Member
wishmobbing's Avatar
Join Date: 2017
City: Stuttgart
State: Germany
Country: DE
Diagnosed: 07/2017
Interest: I lost a loved one to ALS/MND.
Posts: 595
wishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to behold
Default Re: Waiting Game! Very Frustrating

I can't tell you anything but hope for the best outcome possible.
wishmobbing is offline  
Old 02-20-2018, 06:45 PM #3 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,202
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
Very Helpful 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: 1,202
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: Waiting Game! Very Frustrating

Spinal stenosis with myelopathy (cord compress) can cause neuromuscular symptoms and is one of the disease mimics of ALS. However, there should be som differences on EMG, and mri would show if there is cord compression. In particular, if an EMG of the bulbar region shows any changes characteristic of ALS, then that would confirm ALS. If there’s any doubt, an opinion from a neuromuscular disease specialist should confirm one way or the other. There are indeed some people with both stenosis and ALS.

Sorry to have to welcome you here. Best of luck in your journey.
KarenNWendyn is offline  
Old 02-20-2018, 09:28 PM #4 (permalink)
karzy81's Avatar
New Member
 
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
karzy81 karzy81 is offline
New Member
karzy81's Avatar
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
Default Re: Waiting Game! Very Frustrating

Thanks for weighing in. I can’t seem to wrap my head around why they keep sending him for more tests. I guess that is a good thing. It means they aren’t sure I suppose. His spinal stenosis is severe but would it explain fasoculations and muscle weakness ( no pain just very weak) ? We are going to one of the best ALS clinics in the world at Sunnybrook Hospital in Toronto. I just want to be able to move forward and get him this new drug Edaravone which you can only get with a diagnosis. Thanks again
karzy81 is offline  
Old 02-20-2018, 11:13 PM #5 (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: 2,966
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 offline
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: 2,966
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: Waiting Game! Very Frustrating

The waiting game for both yes and no is horrible. I wish there were a simple blood test to rule it out or confirm it. Most of us went through the wait and plenty of people without ALS were kept hanging on for months and even years before they figured out what was going on.

I just wish you strength and assurance that this forum will support you and your father.
KimT is offline  
Old 02-21-2018, 12:09 AM #6 (permalink)
karzy81's Avatar
New Member
 
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
karzy81 karzy81 is offline
New Member
karzy81's Avatar
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
Default Re: Waiting Game! Very Frustrating

I’m so grateful for the responses. Everything is so helpful and it is comforting to know that people care. Do most people have to wait for a lengthy period before a diagnosis?
karzy81 is offline  
Old 02-21-2018, 03:25 AM #7 (permalink)
wishmobbing's Avatar
Senior Member
 
Join Date: 2017
City: Stuttgart
State: Germany
Country: DE
Diagnosed: 07/2017
Interest: I lost a loved one to ALS/MND.
Posts: 595
wishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to behold
wishmobbing wishmobbing is offline
Senior Member
wishmobbing's Avatar
Join Date: 2017
City: Stuttgart
State: Germany
Country: DE
Diagnosed: 07/2017
Interest: I lost a loved one to ALS/MND.
Posts: 595
wishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to beholdwishmobbing is a splendid one to behold
Default Re: Waiting Game! Very Frustrating

As with so many facets of the disease there is not one but many normals.
My PALS was diagnosed within one week (once he was sent to a hospital by his neurologist who was out of her depth and stumbled around for month).
Some have been through hell and back to get a solid diagnosis with years of tests and maybes.
I've also read of cases where the diagnosis switched back and forth between ALS and something else. This is no fun.

Stay strong!
wishmobbing is offline  
Old 02-21-2018, 11:25 AM #8 (permalink)
karzy81's Avatar
New Member
 
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
karzy81 karzy81 is offline
New Member
karzy81's Avatar
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
Default Re: Waiting Game! Very Frustrating

waiting for so long makes it near impossible to become a part of any trials or to take any new drugs that may be available for ALS patients. Doesn’t the increased weakness in his legs and the fasiculations make him a sure candidate for the disease even with the spinal stenosis? Does anyone have any experience with spinal stenosis and whether it is a true mimic of ALS. Wouldn’t he have back and leg pain which he doesn’t?
karzy81 is offline  
Old 02-21-2018, 12:25 PM #9 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,202
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
Very Helpful 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: 1,202
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: Waiting Game! Very Frustrating

Weak legs and fasciculations can be explained by spinal stenosis if there is cord compression.

Yes, waiting is horribly painful. I wondered the same as you, about missing a window of opportunity to hit the disease with promising drugs early on while waiting for confirmation of my diagnosis. Unfortunately the reality of waiting seems to be yet another part of the ALS misery.

It sounds like you’re plugged into the system of seeing appropriate doctors and getting the necessary tests. The good news is that if the symptoms are due to spinal stenosis, surgery can help. Hopefully you won’t have to wait too much longer for answers. Good luck to you.
KarenNWendyn is offline  
Old 02-21-2018, 03:31 PM #10 (permalink)
Angiegal's Avatar
Member
 
Join Date: 2017
City: Kitchener
State: Ontario
Country: Can
Diagnosed: 09/2015
Interest: I have been diagnosed with ALS.
Posts: 287
Angiegal is a jewel in the roughAngiegal is a jewel in the roughAngiegal is a jewel in the roughAngiegal is a jewel in the rough
Angiegal Angiegal is offline
Member
Angiegal's Avatar
Join Date: 2017
City: Kitchener
State: Ontario
Country: Can
Diagnosed: 09/2015
Interest: I have been diagnosed with ALS.
Posts: 287
Angiegal is a jewel in the roughAngiegal is a jewel in the roughAngiegal is a jewel in the roughAngiegal is a jewel in the rough
Default Re: Waiting Game! Very Frustrating

Hi.
I hear Sunnybrook is great (I go to clinic down in London). Playing the waiting game is horrible, I'll agree. Keeping you in my thoughts.

Angie
Angiegal is offline  
Old 02-21-2018, 06:18 PM #11 (permalink)
karzy81's Avatar
New Member
 
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
karzy81 karzy81 is offline
New Member
karzy81's Avatar
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
Default Re: Waiting Game! Very Frustrating

How long did it take for all of you to get diagnosed? Was it a big waiting game as well? Thanks again for all the replies. It really helps
karzy81 is offline  
Old 02-21-2018, 08:35 PM #12 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,202
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
Very Helpful 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: 1,202
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: Waiting Game! Very Frustrating

After seeing an orthopedist, an internist, and a physiatrist, I finally was able to see a neuromuscular disease specialist who strongly suspected I had a motor neuron disease. I had primarily lower motor neuron findings including bilateral foot drops at the time. He ruled out disease mimics. He wanted to reassess me with EMG in 4-6 months.

A second opinion consult a few weeks after seeing the first neurologist was inconclusive (despite abnormal EMGs), and they just wanted to see me 6 months later.

After I returned to my first neurologist 4 months later, he confirmed ALS. My EMGs we’re suggestive of ALS in all regions tested, and the neurologist also noted clinical progression of weakness as well as progression of upper motor neuron signs, all of which he wanted to document in order to confirm the diagnosis.

Hope this info helps you.
KarenNWendyn is offline  
Old 02-21-2018, 09:14 PM #13 (permalink)
karzy81's Avatar
New Member
 
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
karzy81 karzy81 is offline
New Member
karzy81's Avatar
Join Date: 2017
City: Thornhill
State: Ontario
Country: Can
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
karzy81 is on a distinguished road
Default Re: Waiting Game! Very Frustrating

Thanks Karen. My dad has foot drop too. This can only be a result of als not spinal stenosis. All findings point to ALS. Just hope we find out more next month at his next alpontment. Has your throat or tongue been affected? Are you going to try this new drug Edaravone?
karzy81 is offline  
Old 02-22-2018, 01:25 AM #14 (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: 11,119
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: 11,119
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: Waiting Game! Very Frustrating

The problem can be that everyone is so different.

In a way it took us a long time to be diagnosed, but then that was mostly waiting 1 - 2 months at a time for for each new referral appointment, and none of them were with neurologists as no one knew what was going on.

By the time we saw someone who did know ALS, Chris was told this is very likely ALS within 10 minutes. One month later at the ALS clinic he was diagnosed within half an hour.

However, by this point his speech was severely impaired, he had been unable to work for several months, his swallowing issues were moderate, his arms were weak, his hands visibly atrophied and very weak and his walking off kilter. One more month later and his MIP/MEP showed only 30% breathing muscles still working.

Chris was rapid progression, from the point when his speech started to be affected and had we got to an ALS clinic 6 months earlier I think we would have only lived with the certainty of a terminal illness for 6 months longer than we did, it would not have made a real difference to any outcomes.

But yes there are some more hopeful trials out there just now, that is such a valid point.
However, if this is not ALS you really need that to be certain as trials won't help anyone if this is stenosis.

I can honestly say however that it is horrible when you are waiting for the answers, but getting the answer isn't terrific either. I hope you get something definite soon.
affected is offline  
Old 02-22-2018, 02:43 AM #15 (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: 6,528
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: 6,528
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: Waiting Game! Very Frustrating

Cervical and lumbar spine stenosis are common with aging and other conditions. My husband was offered spine surgery years pre-ALS but had other risks. From what you describe, I agree ALS + spine issues is more likely than the possibility of the spine issues causing everything that you mention.

What did the EMG show? As Karen says, that most likely would be key, as it is anyway. Bottom line, it sounds like they are being careful but I would not expect a change in the diagnosis from what you have said.

Best,
Laurie
lgelb is offline  
Closed Thread

Tags
als, breathing, clinic, father, helpful, mri, swallowing, swallowing issues, tests


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
MMN or ALS... Waiting game mbrown0103 Do I Have ALS? Is This ALS? 2 05-22-2017 08:39 PM
Possible ALS Waiting Game jpedrn Do I Have ALS? Is This ALS? 5 02-03-2016 11:23 AM
Waiting game... Grayson's mom Do I Have ALS? Is This ALS? 4 03-17-2011 10:39 AM
What's frustrating to you? jimO General Discussion About ALS/MND 14 01-15-2008 10:22 AM


All times are GMT -5. The time now is 08:15 AM.

 

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