Status
Not open for further replies.

dkcarl62

Distinguished member
Joined
Nov 12, 2014
Messages
220
Reason
DX UMND/PLS
Diagnosis
03/2015
Country
US
State
mi
City
Novi
Hi all,

Not sure where to post my question/concern on this site, so I'll start here.

My UoM neurologist has ordered a repeat cervical MRI. The MRI done a year ago was normal. If this MRI comes back normal, then she will give me a definitive diagnosis of primary lateral sclerosis.

My progression (decline) in the last 6 months has been steep. My concern is that if this progression continues at this rate, I won't be able to walk 6 months from now. I thought that PLS had a much slower progression? Anyone have thoughts or experience with that?

Another concern is her comment "Persons with primary lateral sclerosis can convert to amyotrophic lateral sclerosis, typically within 5 years of symptoms onset." Does anyone know what the percentages or likelihood of that happening is? She is concerned about my muscle atrophy in my calf, although EMG test was negative. I'm exhibiting enough other signs to make her concerned for conversion.

Last question. How do those of you who have been diagnosed maintain hope?

Debbie
 
Hi Debbie,

I also go to UofM for treatment. I have PLS. Please be aware each case of PLS/ALS is different, but I'll be happy (not) to share my story.

My symptoms started in 2008 with slurred speech and a raspy voice. I suspected a minor stroke (or something). This continued getting worse as time went on. In 2011 I started falling a lot, losing my balance, tripping over my own feet and dragging one foot a little. Mid 2012 I was diagnosed with PLS since EMG came back negative for lower motor neuron deterioration. Since, I've had 2 more EMGs and both negative. Yay!

I started using a cane to assist my walking and balance in 2012. In early 2013, I had to retire since I could no longer get around safely. Within a few months, I became dependent on a walker. Mid 2014, I started using a power wheelchair in conjunction the walker. I am now about 95% wheelchair. I'm now 59 years old.

My symptoms seem to get worse, then plateau for a while.

Regarding PLS evolving to ALS, my previous neurologist at Henry Ford said roughly 90% probability. I have not asked that question at UofM, but I will next visit. Don't lose hope, he was wrong with me!

I have not lost any weight throughout my ordeal. My calf muscles are a bit smaller (from lack of use) and its not atrophy. Spasticity in my legs is quite bad. I have very minimal muscle facilations.

I knew through my progression and doctor discussions that I would eventually depend on a wheelchair. Ahead of time, I had my master bathroom made handicap friendly and had doors widened where necessary.

I hope this helps answer some of your questions, Debbie.

How do I cope? Make the most of what you've got everyday with loved ones and friends.

Best of luck! Tractor Boy
 
Hi Debbie,

We're dealing with ALS, not PLS, but I'll respond to your question about hope. We've shifted to shorter term planning and focus on enjoying each moment of each day as much as we can. It's the only way we retain our sanity and find pleasure in life. Do as much as you can now, don't wait. Plan for your future needs, as Tractor Boy has done, but then live in the present. Don't think about what you've lost--that will destroy you. Focus instead on what you do have.

As for PLS becoming ALS, you can worry every day and that won't change a thing. Please don't let worry rob you of the life you have. Live it and enjoy it to the max. If you never develop ALS you will still have enjoyed your time much more than if you let worry control you.

Hugs and best wishes.

Becky
 
Debbie, I believe in tomorrow. There will be a tomorrow (hopefully soon) where a major break through will be announced. I have my doubts it will be a cure but I believe something will be discovered to drastically slow down ALS and PLS. Hopefully, something that may even arrest progression. A ton of money has been recently given to research concerning ALS. PLS will benefit from it too. Sadly, when that day comes... some who have progressed so far may not want to be stuck where they are.

For now, your hope, being your presumptive diagnosis is PLS, is that many have written it often levels off for a while. I think that comes from learning and accepting to do things differently. Hopefully for you too. Maybe your next MRI may change the picture.

There's no word (lucky, grateful, fortunate and etc) that fits properly with PLS over ALS.
 
Thank you all for your thoughtful, insightful comments. I love this blog. It is a God-send to be able to reach out to others who have walked this walk and learn from their experiences and receive support. Tractor Boy, its nice to know that you are in the same medical system as I. I hope we can continue to compare notes and learn from each others experience. Plan for future needs, as reiterated by Becky, is great advise. Al, a cure is certainly a hopeful thought.

The future is a big black hole right now, and its hard to plan for a future I don't have any clue what will be. I don't know if its time to sell my car, buy a hospital bed, find a hairdresser that will come to the house, install a shower lift, cash out my 401K and go to Hawaii? find an home health aid, subscribe to a medic alert necklaces......or just wait and see what I need to do next based upon my need. I don't do well with the unknown.

Thanks for being there and listening.

Debbie
 
Debbie, the future is unknown for all of us diagnosed with PLS.

Each of those decisions you listed would probably be best decided as the circumstance arises for their needs. There is no way to know how your progression will progress. Anticipatory Planning is more fitting for those with a diagnosis of ALS for certain things... maybe most.

There are members to this sub-Forum who are into their 8th, 9th or more years since diagnosis. I believe a few are still working several years after diagnosis. I believe learning to improvise, adapt and accept makes a big difference. Maybe Anticipatory Planning too soon would instill a "give into it" mode. A Neuro told me concerning PLS... "Use it or lose it... sooner." The key is... don't over use it. That would circle back to improvise, adapt and accept.

Hope this helps.
 
PLS doesn't convert to ALS. ALS can appear as PLS during the early years. Generally by year 5 even slow progressing ALS will exhibit lower motor neuron symptoms. Bulbar ALS progresses quickly so they can generally diagnose Bulbar PLS after a few years. It is my experience that PLS progression slows considerably after a period of time. So if your symptoms are somewhat the same for over a year they will likely to continue that way for a while. The point each one reaches that point varies widely. Some people are using a walker after 20 years and some people need a wheelchair after a few.
 
Bill, just sharing what my neurologist told me about PLS to ALS. "Convert" was her term. My symptoms haven't been the same, I have been declining. Al, I will continue working with my trainer and going to physical therapy for as long as I can walk. I pray the decline will slow and walking will be something I can do for many more years. Improvise, adapt and accept sounds like my new mantra.
 
dkcarl62, I have Bulbar PLS (starts with speech). The PLS progressed slowly down my body. It took about 5 years to reach my legs. I went from a cane to walker to scooter to PWC over a period of 18 months. My right leg was much weaker than my left. I am a lefty. I would still be using a walker if my right leg was the same as the left. The PLS has not progressed much since then. I have had it for 12 years.
 
I concur with what has been said here about progression of PLS. My first symptoms started 23+ years ago with right leg weakness and hyper reflexes. It took 17 years for me to get the correct diagnosis, even though I would have times of progression and times of plateaus. Just this past year, I am about 98% in power wheelchair and using canes or forearm crutches the rest of the time. Although even that is changing as my arms are becoming too weak to to support me with crutches. So everyone's progression can be very unique to them. I also work out of my home as a travel agent since I can no longer do my photography business in the way I used too. Just because the body doesn't work so well, doesn't mean we cannot use what we do have to keep us productive.

Welcome to the forum! :)
 
Joyce, here’s some points I wonder if may be factors to progression concerning PLS.

First, I think age of onset could be a factor. I’d think someone in their early 40’s may have chances of slower progression than someone in their early 60s.

A person’s physical condition at onset too, someone who is considerably “out of shape” (for a general description), overweight, underweight (from poor eating habits or drinking) and having other health issues besides at onset. And… those who are in excellent physical condition at onset.

Habitat could be considered too… someone who lives in a ground level, single level Condo versus someone who lives in a two story house where going up and down stairs is part of it along with general light property duties (mowing, leaves and such) would naturally be required to be more active. (“Use it or lose it… sooner”).

And… location, I can’t help but wonder if someone who lives in Minnesota (“Mina-snow-da” as they refer to it) where there is snow on the ground from Halloween to Easter (cold) versus someone who lives in Florida. I’d think the Floridian would fare better even with all the above and below considered.

Finally… stress. Financial, marital, occupational, kids and or a combination of all.
 
Well... did it again. Another one went to moderation. Stay tuned.
 
Joyce, here’s some points I wonder if may be factors to progression concerning PLS.

First, I think age of onset could be a factor. I’d think someone in their early 40’s may have chances of slower progression than someone in their early 60s.

A person’s physical condition at onset too, someone who is considerably “out of shape” (for a general description), overweight, underweight (from poor eating habits or drinking) and having other health issues besides at onset. And… those who are in excellent physical condition at onset.

Habitat could be considered too… someone who lives in a ground level, single level Condo versus someone who lives in a two story house where going up and down stairs is part of it along with general light property duties (mowing, leaves and such) would naturally be required to be more active. (“Use it or lose it… sooner”).

And… location, I can’t help but wonder if someone who lives in Minnesota (“Mina-snow-da” as they refer to it) where there is snow on the ground from Halloween to Easter (cold) versus someone who lives in Florida. I’d think the Floridian would fare better even with all the above and below considered.

Finally… stress. Financial, marital, occupational, kids and or a combination of all.

All interesting questions Al. Not sure if I totally agree that location has much to do with it as I am in Alaska, but my onset was in California. I do believe that stress, mental status and personalities can play a large roll sometime in any disease process. Such as a person who has a natural upbeat positive attitude will most likely fair better then one who leans toward whoa and drama. Not to say that progression will not happen quicker in a positive person, but the one who can overcome the mental toll quicker and move on, will be more productive and most likely more mobile longer most likely from shear will. But this is just my opinion and somewhat my experience due to my own progression.

I totally agree with you on the age and general physical condition on onset of disease. I was in my 30's when my first symptoms appeared and was extremely physically fit and active. Good topic to discuss. It would be interesting to compare notes on peoples ages, physical condition, whether they are more optimistic or pessimistic in their thinking and location of onset, to how fast their progression is.
 
Yup, mine went to mod as well. Probably cause I did a quote of yours Al! ;)
 
"Another one went to moderation"? Not familiar enough with this site to know what that means......

My story started with spinal fusion surgery in 12/2012. All my symptoms began when I woke up. Spent 10 days in a rehab facility, in terrible pain, unable to stand. I rallied from the surgery somewhat in 2013, but not enough to think I was going to recover fully. Thinking all along that there was a mishap in surgery that damaged my spinal cord, I finally ended up in the fall of 2013 with a UoM neurosurgeon. His tests didn't find anything operable, and he referred me to a neurologist at UoM. For most of 2014, the neurologist was on the fence about what could be wrong, until my last visit. Pending the results of a cervical MRI, she is ready to diagnose PLS.

I was active. I took dance lessons, belonged to a hiking group, and biked. I am over 60, so thats a factor, and we just moved in December, so that is definitely a stress factor. I have been seeing a trainer twice a week, and prior to winter setting in here in MI, I went to yoga once a week and belonged to the YMCA and worked out at the gym. My decline is such now that I can hardly walk with a walker. I think a PWC is in my not too distant future. Quite a contrast from those who had a PLS diagnosis for 10-15 years, and you AK, with 23+ years. Thanks for your welcome, btw.

Debbie
 
Status
Not open for further replies.
Back
Top