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Cammarak

Active member
Joined
Sep 24, 2014
Messages
77
Reason
PALS
Diagnosis
06/2014
Country
US
State
NY
City
Williamsville
Hey everybody! I was recently diagnosed with PLS--after being wrongfully diagnosed almost 2 years ago with ALS. I'm still working(I'm a teacher) and hopefully can last another six years so I can retire with a full pension. I am 48 yrs old, and I have had these symptoms for about ten solid years. my physical therapist told me last night that he has noticed a decline in strength this week, as well as an increase in spasticity and stiffness. I'm wondering if anyone out there with this has maintained a normal quality of life for much longer than a decade. I have a husband and three teenage kids to still take care of and am wondering how much longer I can reasonably expect to be able to "do this thing". Any help would be great.
 
Cammarak, welcome aboard (well, maybe not welcome but...) on the slow train called the "No One Knows".
 
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Thanks for the reply! I kind of figured there was no real answer to my question--just looking for someone to be positive for a change. After listening to my primary doc promising to give me morphine to aid in my " end of life" care recently and my physical therapist telling me the declines he's noticing coming with a startling rapidity suddenly, I guess I'm feeling a little down!
 
Whoa!

PLS is a form of ALS but it is not a fatal diagnosis.

Yes, on rare occasion PLS can morph into ALS but don't go to the "end of life" yet!
 
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Yes--first (hopefully) wrongfully--when I was first told it was ALS--then he sent me to two other neuros where after more than a year one was able to say it was most likely PLS and then just recently that he was certain of PLS. This of course comes on the heels of years of misdiagnoses (like just about everyone else has gone through ) such as RA, MS, fibro, general craziness,etc....my primary was just trying to offer support--after 45 minutes of assuring me she wouldn't just let me linger on if worse came to worst, she then told me I had to keep a positive attitude. I told her I could only if she'd stop talking to me.
 
Cammarak, don't know a lot about PLS but after 33 years of teaching, DO know what a demanding job you have. Be good to yourself! If it becomes too much,consider retiring early or going on disability. Good luck as you struggle with this, and let your family pamper you for a change! Donna
 
Thanks for your advice! I've been in the same school for 26 yrs now and the kids just keep me going. I really do love my job and I'm hoping my docs can just keep me in long enough to retire with full benefits --not only for me but for the sake of my family!
 
Cammarak - Welcome to this forum.. I know you will find this so helpful to you. I was diagnosed with PLS a little over 3 years ago and stopped working in December 2013. It is so much better being able to move at a pace my body can handle. I don't know how I worked the 2 years prior to quitting. I loved my job of 23 years, so it was bittersweet leaving. All things happen for a reason, and not working has been a benefit to me. Good luck to you. Staying positive is so important but at times it's tough. Hang in there!
 
Cammarak, I would seriously consider a third opinion concerning your PLS. According to Pringle Et Al criteria it takes 3 to 5 years of observation and exclusion to make a proper diagnosis of PLS. How you were ever diagnosed with ALS by a supposedly qualified Neurologist two years ago then two other neurologist recently within one year diagnosed you with PLS (and one confirming it) is worth a fourth opinion if there ever was one.

Being told you have a terminal disease by a neurologist and now you don't and within in a year you've been told you have PLS... go for a fourth opinion at an qualified ALS Clinic!
 
I understand your frustration. Sometimes it seems that all the doctors do is point out the negative or what has declined since the last visit. We do our best to stay away from doctor's offices for that very reason.

Some days we have to fight for our peace of mind! Don't let anyone shake your resolve to be positive. It sounds like you have a job you have enjoyed and a family you love. Focus on what you CAN do and what you enjoy and try to take it easy when you can.
 
Thanks for the reply! I kind of figured there was no real answer to my question--just looking for someone to be positive for a change. After listening to my primary doc promising to give me morphine to aid in my " end of life" care recently and my physical therapist telling me the declines he's noticing coming with a startling rapidity suddenly, I guess I'm feeling a little down!

Hell, take your Doc up on the morphine offer!

As others have pointed out, the rate of progression is wildly variable. I was diagnosed with PLS 14 years ago (I'm 52 now), and only this year stopped working. So you may well have many relatively unhindered years ahead of you.

Jim
 
Wow--so many replies--all good advice.... Jim, let me assure you I would never turn down an offer of morphine! I do want to keep working, but I kind of feel like I'm not going to make it to my full retirement--I already come home and go to bed by six or seven every night , missing most time with my family which blows. ( the missing time--not the family). Then I usually wake up in the middle of the night and need more tizanidine to relax all the cramped up muscles--vicious cycle, I know.
As for the neuros, I'm in good hands now. I live in Buffalo so I'm at DENT now and they are the best around for this. The first neuro, after sending me to a colleague of his to confirm ALS (which I realize later he was using interchangeably with MND) then sat me down and told me with much gravity and a hint of reverence that it was "time to go to DENT!". Yes, I still go in every two months for them to check " progress" but I've had every test and exhibited every physical sign for them to feel reasonably sure it's PLS.
 
Camarak,
Welcome to the group, sorry you had to join. You will get great advice here (as you have seen), so ask away.


Mike
 
Hi Cammarak,

Welcome to the forum -- also very sorry you had to join.

At one time or another, most of the PLSers here have posted their need to monitor their activities very closely, to prevent overdoing things -- half a day of moderate physical work or activity can put most of us on the shelf for a few days (and more). The important thing is that you learn to "listen" to your body -- and stop when you have to.

Up to a few years ago, I traveled extensively (not uncomplicated or unproblematic, but I managed). Now, I work from home exclusively, because there is no possible way that I could work away from home any longer, as the impact of the disease (in terms of symptoms) has become unpredictable. My current job allows me the flexibility to do what I can when I can (still not always easy).

I was shocked to read your morphine/ end-of-life story -- I can only hope that the doc in question confused PLS with ALS. Assuming you do have PLS, you'll find that you need to educate MOST docs/ specialists that you may see in the future, as most are not familiar with PLS (and this includes many "small town" neurologists!). I would highly recommend that you see a "neuromuscular specialist" - if you've not yet done so.

The Medscape site is, I think, provides a truly excellent overview of PLS. See: Medscape: Medscape Access

Be sure you navigate through all tabs on the left-hand menu (Background, Etiology, etc.) as well as those at the top as well (Overview, Presentation, etc).

From your posting, while you've noted more rapid progression recently, your symptoms (10 years) do seem to be following a PLS track. Speaking only from my personal experience, I find that while my symptoms have clearly worsened over time, the progression tends to accelerate at times, while at others it is slow and insidious. But always, the general trend is one of progression, worsening, and widening of symptoms (mine have moved from both legs to low back, neck, shoulders, and arms).

Mike
 
Hey, Mike! Thanks for the link--I had read that site before but I read it again from beginning to end to make sure I didn't miss anything. My doctors feel my progression is pretty classic as far as that goes. I just had a cine esophagram today and although I have no official results yet the radiologist said swallowing seemed fine. So that's good news. As for the whole morphine story, my GP was just trying to reassure me in case worse came to worst and PLS became ALS that she wouldn't let me suffer.
 
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