Old 06-12-2018, 10:03 AM #1 (permalink)
Sille's Avatar
New Member
 
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Sille Sille is offline
New Member
Sille's Avatar
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Default Sille's thread: Can we talk symptoms?

Thank you so much tracyliz,
Your detail is very much appreciated. As someone who is just at the start of this journey I'm just trying to get a handle on what the future will look like.

I know my progression is still in its infancy and I'm yet to be definitively diagnosed. I've had 2 CTs, 2 MRIs, 1 EMG, X-rays galore, ultrasounds and a crap load of blood tests...all negative (except high Cholesterol). All in all on paper I appear to be a perfectly healthy human being. That is what is so frustrating.

Because I'm so new and just at the start I can't help but think what I have is not PLA. So, I'm searching and searching for alternatives. I've created a list of over 50 thinks that produce some of my symptoms but just can't find anything that produces them all. Perhaps I have a few things going on with me.

I guess the search continues as I still have a few years before a true PLS diagnosis.
Sille is offline  
Old 06-12-2018, 11:51 AM #2 (permalink)
Sille's Avatar
New Member
 
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Sille Sille is offline
New Member
Sille's Avatar
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Default Is it something else?

Quick Question to the group...

Did your initial diagnosis turn out to be something else? I realize it takes a long time for a definitive PLS diagnosis but while you were waiting did it turn out to be something else?

Would love to hear stories about yourself or someone you know.
Sille is offline  
Old 06-12-2018, 03:47 PM #3 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,676
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,676
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Can we talk symptoms?

Sille-

Are you being seen at an ALS clinic? What is the next step with regards to your diagnosis search? The usual deal is for a neurologist to refer you to a neuromuscular specialist if they expect Motor Neuron Disease.

Calgary has an ALS centre and other specialized neurologists. It looks like your neuro is looking into things, but maybe quite early in your "journey", as these things go. What were the conclusions from your EMG?
ShiftKicker is offline  
Old 06-12-2018, 04:32 PM #4 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 350
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 350
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Re: Can we talk symptoms?

Hi Sille,

May I ask who did your EMG and who you are seeing for a neurologist?
Bestfriendstilltheend is offline  
Old 06-13-2018, 10:38 AM #5 (permalink)
Sille's Avatar
New Member
 
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Sille Sille is offline
New Member
Sille's Avatar
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Default Re: Can we talk symptoms?

Thanks to all.

I guess I was in the wrong spot. My Neurologist says it is UMN and suspects it is PLS given that everything I have done is negative (EMG of Legs which is my current trouble spots came back negative).

I'll poke around this new section to see if there are people with similar symptoms.
Sille is offline  
Old 06-13-2018, 12:03 PM #6 (permalink)
Sille's Avatar
New Member
 
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Sille Sille is offline
New Member
Sille's Avatar
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Default Re: Can we talk symptoms?

Bestfriendstilltheend

My Neurologist and the person who did my EMG is Dr. Jagdeep Kohli. Have you heard of him? Is he good? He seems nice and is reffering me to the South Campus Specialists.
Sille is offline  
Old 06-13-2018, 12:20 PM #7 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 350
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 350
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Re: Can we talk symptoms?

Hello Sille,

I've not heard of that doctor, but everyone at South Health is wonderful. A very close knit sort of group with no pretensions at all. My husband's neuros introduce themselves by their first name. We still call them Dr. Chhibber or Dr. Korngut out of respect, though. Do you know if you'll be seeing either of them?

Please keep us updated as to how everything is going.

J
Bestfriendstilltheend is offline  
Old 06-13-2018, 02:07 PM #8 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,676
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,676
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Sille's thread: Can we talk symptoms?

This thread is specific to Sille's pathway to diagnosis. Original post with discussion can be found here: Can we talk symptoms?

Original post:

Quote:
This is my first time posting and I've only been poking around for a week as it was a week ago that my Neurologist said he thinks I may have PLS. I've only had my symptoms for a year and I know that it can take many more for a definitive diagnosis. With that being said, I'm wondering what other symptoms people are experiencing that are not the traditional. I'll start with what I think my traditional symptoms are:
Poor Balance
Difficult to walk
Morning spacisity
Diffcult to stretch my legs when I wake up
Wobbly legs when I go down stairs
Legs really don't work when I get the chills or anxiety

Here are a few I don't see on anyone's list:
Intollerance to alcohol (I get intoxicated and my legs don't work very well after 1 or 2 drinks)
My first cigarette of the day is dibilitating (I know I should not smoke)
Fingers tingle all the time on my right hand
Small of my back is always ichy
itchy head
ears feel full like they need to be popped all the time
penis is extremely sensitive during sex (sorry if that is to much info)
It's not difficult to pee but feel weird (hard one to describe)
heartburn comes on much more easily


Anyway, I think I'll be posting much more often as I go through the coming weeks, months and years. Seems like there is a wealth of knowledge here that I just don't find anywhere else...being that this is very rare and many doctors know little.

Also, anyone have any ideas about forums for PLS that are more active? Just checking.
Thanks
ShiftKicker is offline  
Old 06-13-2018, 02:12 PM #9 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,676
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,676
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Sille's thread: Can we talk symptoms?

Sorry for the out of order posts. Anything I move from an older post goes in order of time it's posted.


Sille,

Just to confirm, have you been given any sort of diagnosis at this time? Have you been referred to the Calgary ALS centre to be seen by one of the neuromuscular specialists there? Or are you still being taken through the diagnostic ringer with further blood and imaging testing scheduled?
ShiftKicker is offline  
Thanks from
Clearwater AL (06-13-2018)
Old 06-13-2018, 02:16 PM #10 (permalink)
Sille's Avatar
New Member
 
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Sille Sille is offline
New Member
Sille's Avatar
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Default Re: Sille's thread: Can we talk symptoms?

Yes, I'm being referred to the Calgary ASL Centre after my neurologist belief that it could be PLS after many, many tests. CT, MRI, blood, EMG etc.
Sille is offline  
Old 06-13-2018, 02:34 PM #11 (permalink)
Clearwater AL's Avatar
Very Helpful Member
 
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,318
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Clearwater AL Clearwater AL is offline
Very Helpful Member
Clearwater AL's Avatar
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,318
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Default Re: Sille's thread: Can we talk symptoms?

Sille, the reason you are being considered for PLS is that your EMG did not indicate any
lower motor issues.

Trying to be nice here... you've indicated you have read extensively concerning MND.
I'm sure no where did you read below as you wrote...

"Here are a few I don't see on anyone's list:
Intollerance to alcohol (I get intoxicated and my legs don't work very well after 1 or 2 drinks)
My first cigarette of the day is dibilitating (I know I should not smoke)
Fingers tingle all the time on my right hand
Small of my back is always ichy
itchy head
ears feel full like they need to be popped all the time
penis is extremely sensitive during sex (sorry if that is to much info)
It's not difficult to pee but feel weird (hard one to describe)
heartburn comes on much more easily."

Yes, that one concerning your penis was TMI and completely unrelated to MND.
If anything... those symptoms would dismiss you from a diagnosis of PLS.

I hope future testing gives you a curable diagnosis. And hopefully... keep to
symptoms related to MND. I know you were just asking questions but I'm sure
you have read enough to know those questions were unrelated to MND.

Good luck on your future testing.
Clearwater AL is offline  
Thanks from
ShiftKicker (06-13-2018)
Old 06-13-2018, 02:48 PM #12 (permalink)
Sille's Avatar
New Member
 
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Sille Sille is offline
New Member
Sille's Avatar
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Default Re: Sille's thread: Can we talk symptoms?

Thanks Clearwater
I was indeed trying to see if there was anyone else with weird symptoms. Perhaps I was grasping at the thought that there was someone else out there who has had similar symptoms and had an idea of what I was looking at.

You are correct that these 'other' symptoms appear to be unrelated to MND. Just trying to educate myself as much as possible and look at alternatives while I await my appointment with the neuromuscular specialists here in Calgary.

Thanks
Sille is offline  
Thanks from
Clearwater AL (06-13-2018)
Old 06-13-2018, 07:56 PM #13 (permalink)
Vincent's Avatar
Senior Member
 
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 777
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Vincent Vincent is offline
Senior Member
Vincent's Avatar
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 777
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Default Re: Sille's thread: Can we talk symptoms?

One of the unfair things with MNDs is they don't give you a free pass on all the other things that come with being of a certain vintage. Since diagnosis, I've been diagnosed with type 2 diabetes and hypertrophic cardiomyopathy. Both completely unrelated to ALS. Some patients present with upper or lower motor neuron involvement. Upper is PLS and lower is PMA. But both can evolve into ALS. I know someone in the process of having PLS and lots of bulbar symptoms who is being tested to see if he is showing lower motor neuron involvement. But if it is still just PLS he can expect a normal life expectancy. The "other" symptoms need to be investigated. Getting sick can exacerbate your PLS. Good luck with figuring out what's going on.
Vincent
Vincent is offline  
Old 06-14-2018, 10:00 AM #14 (permalink)
Sille's Avatar
New Member
 
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Sille Sille is offline
New Member
Sille's Avatar
Join Date: 2018
City: Calgary
State: AB
Country: Can
Interest: I have been diagnosed with UMND/PLS.
Posts: 14
Sille is on a distinguished road
Default Re: Sille's thread: Can we talk symptoms?

Thanks for your words Vincent,
I feel like I have two things going on. I am showing early PLS symptoms as well as something else. My Neurologist believes I may have PLS (or another MND) but says the other symptom are unrelated to any MND he can think of which I agree with based on other people on this forum. Here in Canada I've been told (by my Neurologist) that the diagnostic process is like a tree...we go down a branch with each test leading us through each twig off that branch. If we reach the end of that branch and there is no diagnosis then we head back to the trunk and start over. I'm frustrated cause it take soooo long.

Well, I guess that if it is PLS I still have to wait anyway for a definitive diagnosis.

Any advise from anyone in regards to what people have done while they wait I'd love to hear. Especially in the Canadian system.
Sille is offline  
Old 06-14-2018, 10:15 AM #15 (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: 6,437
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: 6,437
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: Sille's thread: Can we talk symptoms?

Being in your position with a problem acknowledged by your neurologist but undiagnosed is terribly difficult and stressful

For what it is worth my advice is

Work with your doctor. Hard as it is these things take time. Take a tiny bit of comfort in the fact that the more aggressive forms of MnD get diagnosed more quickly

Consider seeing a psychiatrist for support and validation. Fiona has shared how helpful she found it during the diagnostic process and even after

Don’t stop living and enjoying life. It is easy to get consumed by the search for answers. Do what you need to do to find them but if this is MND you are never going to feel better than you do right now. Enjoy every moment so you don’t have regrets later
Nikki J is offline  
Thanks from
Clearwater AL (06-14-2018)
Closed Thread

Tags
back, diagnosis, ideas, info, neurologist, pls, symptoms, symptoms?, work


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
Can we talk symptoms? Sille Do I Have ALS? Is This ALS? 10 06-13-2018 02:02 PM
Another symptoms thread Neil1689 Do I Have ALS? Is This ALS? 28 02-08-2018 11:05 AM
Another concerning symptoms thread MaizeNBlue Do I Have ALS? Is This ALS? 12 04-24-2012 01:01 PM


All times are GMT -5. The time now is 05:12 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