Old 02-22-2018, 01:46 PM #16 (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 agree. All those symptoms canít be due to severe spinal stenosis but on the other hand why would the doctor order another test if he didnít think it was a possibility?
karzy81 is offline  
Old 02-22-2018, 02:31 PM #17 (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: 6,536
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: 6,536
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

He might still think it a non-zero probability. As you can imagine, it is mandatory to exhaustively rule out other causes, esp. treatable ones, before settling on ALS. That said, "non-zero" as he might see it is likely very small, I am sorry to say.
lgelb is offline  
Old 02-22-2018, 08:18 PM #18 (permalink)
August2's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: Houston
State: TX
Country: US
Interest: I have been diagnosed with ALS.
Posts: 8
August2 is on a distinguished road
August2 August2 is offline
New Member (Say Hi)
August2's Avatar
Join Date: 2017
City: Houston
State: TX
Country: US
Interest: I have been diagnosed with ALS.
Posts: 8
August2 is on a distinguished road
Default Re: Waiting Game! Very Frustrating

I started with Bulbar symptoms and went directly to a neurologist who ordered an MRI with contrast which showed nothing, then received an EMG which made the definitive diagnosis for ALS.
August2 is offline  
Old 02-22-2018, 10:59 PM #19 (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

That sounds like you found out pretty fast which unfortunately isnít what we are experiencing. Were you exhibiting upper body symptoms?
karzy81 is offline  
Old 02-22-2018, 11:00 PM #20 (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

Guess we will just have to wait and see. All this speculation means nothing. Iím just thankful that he isnít exhibiting any symptoms above the waist as of yet
karzy81 is offline  
Old 02-22-2018, 11:03 PM #21 (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

Karen thank you so much for all your input. It seems like you had to wait for a pretty long time for your diagnosis as well. Hopefully this time around we will get some answers but I have a feeling they may try and treat his stenosis before giving him a diagnosis which is worrisome to me
karzy81 is offline  
Old 02-24-2018, 09:45 AM #22 (permalink)
Lkaibel's Avatar
Very Helpful Member
 
Join Date: 2016
City: Minneapolis
State: MN
Country: US
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,074
Lkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud of
Lkaibel Lkaibel is offline
Very Helpful Member

Lkaibel's Avatar
Join Date: 2016
City: Minneapolis
State: MN
Country: US
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,074
Lkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud of
Default Re: Waiting Game! Very Frustrating

Even our rapid diagnosis was not without complications. Brian did indeed have an injury to a nerve at the front of his left leg which could have and most commonly would have explained his drop foot. However, the fall that caused that injury was likely caused by weakness from ALS.

In addition, the cramps we - and the Doctors first assumed were caused by very heavy work building decks for a friend were in fact ALS symptoms rearing their head.

I’m sorry your dad is dealing with Stenosis regardless of if he has ALS or not. It’s a painful and weakening condition all by itself. My mom is dealing with it right now and may need surgery.
Lkaibel is offline  
Old 02-25-2018, 02:49 PM #23 (permalink)
Member
 
Join Date: 2014
City: Austin
State: Texas
Country: US
Diagnosed: 11/2014
Interest: I have been diagnosed with ALS.
Posts: 348
mpnatx is on a very distinguished roadmpnatx is on a very distinguished road
mpnatx mpnatx is offline
Member
Join Date: 2014
City: Austin
State: Texas
Country: US
Diagnosed: 11/2014
Interest: I have been diagnosed with ALS.
Posts: 348
mpnatx is on a very distinguished roadmpnatx is on a very distinguished road
Default Re: Waiting Game! Very Frustrating

From diagnosis to confirmation took 12 weeks. I went in for a shoulder injury and left with a probable ALS or MMN diagnosis before I had symptoms. SHOCK! The shoulder injury had nothing to do with ALS. Symptoms that I didn't recognize as being serious such as minor overall weakness I attributed to getting older and fasciculations which I thought were benign.
I scheduled all the blood tests and MRIs very quickly, (I don't procrastinate). The MRIs did confirm stenosis in my neck.
The second opinion with the specialist at UT medicine was 12 weeks almost to the day. They confirmed ALS.
My theory is since I was diagnosed very early, I may appear to be slow progressing. Just a theory!

At my last clinic, the Dr told me I might be in the ten percent to make it to ten years. I looked at her and said "maybe I don't have ALS". She looked me in the eye and said in a very empathetic tone "You have ALS".
mpnatx is offline  
Old 02-25-2018, 07:59 PM #24 (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

So there you go I guess stenosis is common with als. My dad has both lumbar and cervical spinal stenosis. Will he be the lucky guy to have all three? They said my dad is very early on as well as it isnít affecting anything above his waist. Both neurologists he saw said it was very early. Donít know if thatís good or not but I would like to get him the new drug edaravone. Sounds like it could be good
karzy81 is offline  
Old 02-25-2018, 08:30 PM #25 (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

Sounds like youíve been going strong. Are your legs very weak or do you have overall weakness?
karzy81 is offline  
Old 02-25-2018, 11:01 PM #26 (permalink)
natasha's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Burnsville, NC
State: North Carolina
Country: US
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 4
natasha is on a distinguished road
natasha natasha is offline
New Member (Say Hi)
natasha's Avatar
Join Date: 2018
City: Burnsville, NC
State: North Carolina
Country: US
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 4
natasha is on a distinguished road
Default Re: Waiting Game! Very Frustrating

I am so sorry to hear about your dad. My dad had ALS and I also worked in Neurology so I have a pretty solid understanding of the diagnostic process, although I am not a physician. The diagnostic process is one of the most difficult periods for family members, I remember the frustration. Yes, it is very very common for a lengthy testing and waiting process to diagnose ALS. The reason for this is that ALS is a rule out diagnosis. That is, a neurologist does not give this diagnosis unless all other explanations have been ruled out. Unfortunately there is no specific test that says "yes this is ALS," its more like this test suggests it could be ALS but it could also be X, Y, or Z. Once the doctor can confirm it is not X, Y, or Z then they can diagnose ALS. The process does vary person to person especially depending on how advance their symptoms are and whether their personal case is complicated. For my dad his case was complicated because he had several other health problems that could have also caused his symptoms, but after a lengthy process of testing and waiting and testing and waiting we did finally get the diagnosis which I remember very clearly as both incredibly emotionally painful but also relieving that we finally knew what was going on and that process was over. I looked back and it looks like it took nearly 2 years for his diagnosis, though this is longer than normal I believe because of his complex medical history. My best advice to you is to keep advocating for your father as you have. Make sure to self-care through this stressful time. Don't hesitate to get a second opinion if you're not getting answers. I literally had a general neurologist send my father home with a wheelchair and no diagnosis and no plans to pursue a diagnosis and I had to fight for him to get the testing necessary for diagnosis. So, as frustrating and difficult it is, just keep in mind that if your dad's doctor is continuing with more tests its a good sign and that the doctor is not just throwing their hands up in the air and not pursing answers for him. Also, make sure your dad is seeing a neuromuscular specialist if not already, a general neurologist may not be qualified enough. Lastly, if possible, have extra support for yourself as you go through the diagnosis process with your dad. I clearly remember how hard the day was when we got the news. I hope the best for your dad and hope it's not ALS. Regardless sending you warm wishes and positive vibes.
natasha is offline  
Old 02-26-2018, 01:06 PM #27 (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

Thank you so much for sharing your story. Maybe Iím just trying to look on the bright side but I know of two specific instances where someone was exhibiting fasocualtions in their lower and upper body as well as leg weakness and it was just a result of their stenosis. I am praying and hoping that is my fathers case. As I said before he isnít showing any other symptoms aside from leg weakness (itís gotten worse) and fasiculations. It wonít be too long now as we have an appointment a week from Wednesday. Thank you so much everyone for your support
karzy81 is offline  
Old 02-26-2018, 01:55 PM #28 (permalink)
August2's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: Houston
State: TX
Country: US
Interest: I have been diagnosed with ALS.
Posts: 8
August2 is on a distinguished road
August2 August2 is offline
New Member (Say Hi)
August2's Avatar
Join Date: 2017
City: Houston
State: TX
Country: US
Interest: I have been diagnosed with ALS.
Posts: 8
August2 is on a distinguished road
Default Re: Waiting Game! Very Frustrating

In my case, the EMG was conclusive immediately and the ALS diagnosis was made.

How many EMG's has your dad had so far?
August2 is offline  
Thanks from
jj93 (07-29-2018)
Old 02-26-2018, 02:08 PM #29 (permalink)
August2's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: Houston
State: TX
Country: US
Interest: I have been diagnosed with ALS.
Posts: 8
August2 is on a distinguished road
August2 August2 is offline
New Member (Say Hi)
August2's Avatar
Join Date: 2017
City: Houston
State: TX
Country: US
Interest: I have been diagnosed with ALS.
Posts: 8
August2 is on a distinguished road
Default Re: Waiting Game! Very Frustrating

At the time of diagnosis, which was 3 months after symptoms began, I did have bulbar symptoms, speech and swallowing but no upper extremity, lower extremity, trunk weakness or breathing issues.

I hope your dad has only the spinal stenosis diagnosis. If your still searching, maybe the EMG would help determine the diagnosis.
August2 is offline  
Old 02-26-2018, 08:00 PM #30 (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

he is scheduled for his third meg in five months. Is that normal?
karzy81 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 02:57 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