PLS progression timeline

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Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,304
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
City
By the beach
I know many of you would have done this before, sorry.

I'm hoping you'll all humour me and give me a timeline on your progression.

I know we are all different with onset and progression. I'm interested to see where I fit in.

Ta heaps!

God bless, Janelle x
 
I have Bulbar PLS (starts with speech). PLS progression can very wildly. However, I have heard of at least 4 people where Bulbar PLS has progressed at a similar rate.

Year 1 - Bulbar symptoms start
Year 2 - Speech problems progress and you become hard to understand
Year 3 - Speech is worse but progress more or less stabilizes
Year 5 - Balance and leg spasticity begin.
Year 6 - Need cane or walker to walk.
Year 7 - Need scooter or PWC to get around
 
Billbell52, yep, that's me! TB
 
Left foot drop following meningitis, November 2014
Increasing left leg spasticity, followed by mild left arm spasticity around February 2015
Loss of fine motor control and strength left hand June 2015
Mild jaw, right leg and arm spasticity July 2015
Balance issues requiring cane when fatigued, October 2015
 
Swift decline starting in Dec 2012 after spinal fusion surgery. Now, (almost) Dec 2015, 99.9 % use scooter. Can still stand and transfer, but balance is gone, clonus and spasms increased, speech slowed, fingers curled, PBA, swallowing problems.
 
MTaylor, I have Bulbar PLS. Usually it takes 4-5 years to get a PLS diagnosis since certain types of ALS can appear as PLS in the early years. I was given a PLS diagnosis after 2 years because Bulbar ALS progresses rapidly. I was told I would be near death if I had Bulbar ALS. I am really sorry to hear about your friend.
 
Early 1990's right leg weakness and spastic cramps with toe stubbing (foot drop) and limp. Late 1990's left leg shows same symptoms and falling a lot. Side diagnosis of CMV and EBV along with loads of docs treating me for illness that were not there and then ruled out, in 2006 I had a small stroke that was diagnosed on several MRI for 3 years, but cannot be found on the last MRI in 2011. 2009 was diagnosed with PLS, confirmed again in 2011 with muscle biopsy.

I now have weakness in all extremities as well as spasticity controlled somewhat by meds. I get hoarse frequently and have issues with swallowing some liquids if I am not careful with thin liquids. This started about 3 years ago and was confirmed with a swallow test.
I am 98% in a wheelchair and use canes when not.
My progression has been extremely slow compared to most here. Unfortunately, I do not trust doctors anymore, other than my primary who treats me with meds for PLS to keep me as comfortable as I can be.
 
Hi,

I've probably had symptoms of PLS since early 2000, although the concensus now seems to be that any symptoms I had at that time were masked by low back problems (I had an L3-S1 fusion - with all the hardware - in 2009). A year after the surgery, I persisted with pain and heaviness in both legs, was advised to see a neurologist, and was initially diagnosed with "progressive spastic paraparesis." I had all of the usual bloodwork (copper, iron, HTLV I and II, etc. etc.) as well as EMGs, CT myelogram with spinal tap -- all except for genetic testing (there is no apparent UMND in my family, so testing is probably less useful - although I'll never know for sure. I cannot have an MRI, because I have a spinal stimulator (I no longer use, but having it removed would just be another surgery, and that's a risk I'm not willing to accept).

Up to the last 6 months, the progression of my symptoms had largely been insidious -- slow (but variable) progression with some plateaus. But in the last several months, the leg weakness, spasticity, and balance problems have increased significantly. I can no longer walk without difficulty - the spasticity varies day by day, increasing noticeably with increased stress levels, cold weather (ugh!), sitting upright for too long, and walking (and all sorts of unknown other!). I have a neurological bladder, I choke at times, have increased tone in my arms (they hurt), and simple things like folding towels causes my muscles to fatigue quickly -- at which point I become short-of-breath (even typing this causes my forearms to ache). I have low back, neck, and shoulder, arm, foot, and hand spasms and cramping. In many ways, I often feel that my symptoms are more compatible with MS than they are with PLS.

But my progression has followed the textbooks pretty closely -- starting in both calves and working its way up. I can't specifically pinpoint when any of my symptoms started, to tell you the truth. But today, I can no longer differentiate the cause of pain that originates from PLS or pain that might be caused by something else instead. For example, the pain I occasionally have in my left arm and forearm would have most other 55 year-olds in the E.R. and on a heart monitor tout-de-suite. I imagine that many of us experience symptoms this way.

And while I'm not at all happy to admit this at all, PLS has changed me. I was once a profoundly Type-A individual -- always something to do and somewhere to go. And I know this might sound strange to some, but I've come to view the world and the people in it with a certain sense of awe: "They did WHAT? Ran 26.2 miles?" -- when, in fact, I've run this very distance myself several times in the past. As I've said many times before, guarding the well-being of the psyche is as critical in PLS as is the management of physical symptoms.

Mike
 
Hey Mike, long time.

In current Threads I spoke out for the first in a long time. I've changed... I'm now miffed when I read of a member somewhat happy to finally receive a diagnosis and write rather distinguished, jubilant (maybe not the right words) to have received the diagnosis. I remember just saying rather detached, "It is what it is... I guess." Now, I find myself with moments of being completely numb to my surroundings or events going on around me. I have discouraging days when there are things I can no longer do. I have days/moments of fear when I think of tomorrow... how am I going to keep this place. (Yea, hard ass Al is having moments of fear.) But. I always try to recall those with ALS. I have an appointment soon with a Neuro-counselor... I write this for those who may read this and find their emotions changing about things too.

Mike, thanks for your post.
 
My turn to speak out. Dunno if you would call these emotions, more characteristics.

I am usually quite diplomatic.
I joined this community to share experiences. To share compassion, support, advice and ideas.

What I am getting from one particular member is quite juvenile to be honest.

Not sure Al, if your doctors kept you in the dark for the five years as to what was going on before diagnosis. Mine didn't.
My doctors are obviously far inferior to you in their knowledge, as they shared quite a few different scenarios with me.
Most of them were quite scary. One of them they thought could kill me at any time.

I don't consider myself old, I was 39 when this all started. I'm 43 now.

Jubilant was definitely a word that would have described how I felt upon receiving my diagnosis. Being told I had 20 years average instead of the 6 months previously mentioned felt like a gift, considering the age of my children.

Reality does sink in. It's a bit like common courtesy. Takes longer for some for it to develop. I too have days of fear. Do I really want to continue as I am? Watching my children grow being a part of their lives, but because of disabilities being excluded from so many things? Will I be able to hold my grandchildren?

I agree that you are allowed to have your opinion. Please know though, your opinion is NOT my opinion and your constant belittling of me, whilst very unwarranted and unnecessary, will continue to be tolerated as I have had an excellent upbringing and taught to respect my elders.

Very difficult to go against my own principles and have a go, but it's Christmas. A time for giving.
 
I really understand, I think, the frustrations of the good folks who are here exchanging good information.

Sometimes a post will arouse emotions in us or others. If you find this happening to you, I ask that you take a breather before responding. This is not directed at a particular member, but is a general request to everyone. Thanks. --Mike
 
I have been walking a proverbial tight rope for the last 7 years, especially the last 4 years when my symptoms became so drastically life changing. The tight rope concerned my diagnosis of having PLS or ALS.

Well, I had my ALS Clinic visit on Wed, Dec 16th. I finally asked my neuro, point blank, "Do I have ALS or PLS?". He hesitated a bit, then said he believes I have PLS.

With hearing that, I was instantly happy, ecstatic and very "JUBILANT" !

Merry Christmas everyone! TB
 
Thank you Mike... I didn't think any thing I wrote would irk someone. But... you never know who will take offense to anything today. If anything... I was referring to some posts I read long ago. I've been a member for a few years. TB... I'm happy you're happy with your diagnosis. There are many MNDs that are treatable and even curable. Just my opinion... if it was ALS I'm sure there were have been positive indicators long ago. But... who knows for sure. Green Queen, I fail to find "constant belittling" (from my part) following your many posts (1,085 just this year) throughout the Forum. But... that's your opinion. Whatever...

PS. This is a Forum...

PS PS Merry Christmas to all. Happy Holidays to other folks, have a good weekend to the other other folks and Happy Humbug to those who feel that way. :)
 
My story looks similar to BillBell and TB.

Year 1: slurred speech, PBA, occasional choking
Year 2: speech slightly worse
Year 3: balance problems starting
Year 4: can walk unaided but need to move slowly
Year 5: legs spastic sometimes, need a cane or walker, arms starting to be affected

It feels like I am losing ability throughout my body rather than total loss to some area before moving on. For example, after 5 years of speech difficulties, I can still be understood most of the time. Right now, it seems like my speech and legs are stable and my arms are under attack. In the last year (Year 5), I have had the worst progression. I am hoping it will slow down soon.
 
Thanks everyone for your replies regarding progression. I really appreciate your time in doing that for me. It's helped a lot.

Wishing you all a progression free 2016.

Janelle x
 
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