Yesterday i was diagnosed with PLS

[Vitaly]

I still have more tasts to do but my neurologist is sure that this is PLS

Yesterday was the worst day of my life

I'm 29 years old, i have noticed first symptom about 2 years ago, first was instability in my knee, now i have stiffness in my left leg and slow control of my left arm, also i'm starting to notice instability in my right leg.

 

[sral]

I'm so sorry to hear that you are suffering. I guess you need to be positive that it's PLS.

If you need support or answer to questions, you're at the right place. The people on this forum are WONDERFUL

 

[DeeMichelle]

Vitaly

I just want to say I'm very sorry you are young for such a potential diagnosis. I can only echo what was said before this is such a good site for help; support and friendship. I'm sure you will get lots of people reaching out to you.
And it's true people here really are wonderful...
Dee

 

[Frizzel]

Pls

Welcome Vitaly,

I have had PLS for 11 years now. I am always interested in the symptoms of other PLSers. Do you have stiffness? Spacticity...tight muscles? Drop foot?

It's the craps to have the diagnosis however it is also the craps to not have one and wonder what could be wrong with you. It took almost 8 years before I was finally diagnosed. I finally went into the ER when I was having a bad day and my husband said, "I'm not leaving until you figure out what's wrong with her."

Pain from the spacticity can be a challenge. I try to keep my feet, legs and torso as warm as I can since getting cold can make it almost impossible to move.

I still work, (I can type some days if I keep my hands stablized...I have an asssistant to does most of my hand work...my voice is still strong for most of the day. I walk short distances, travel...takes a bit of preparation and I still get out to go places...although everything takes effort I talk to friends with ALS and no matter how hard they try, they struggle more than I do to make life happen.

DOn't know many others with true PLS. It's a world of daily adjustments. I think of it as riding a wave...Sometimes I'm on the surf board, sometimes I fall off...sometimes, I'm struggling to get back into the water and often I struggle to get back to the stable ground of the beach.

I try to make about one outting a day if I go out. Otherwise, I get overtired. Not use to pacing myself, however if I do...I am ready to go again the next day.

You're the age of my son. I feel sad in one way that you have PLS...in another way, we all struggle in life with something. Compost is made from crap. PLS is the crap that only the Lord (my personal faith..to make each day the best I can make it. AND I can't do it alone.)

Find something you love to do. You could live for YEARS with PLS. I think of the people on this site who year after year are there for people with MND's cheering them on from their computers, power chairs, communication devices...THEY are my heros!

I allow myself to feel the feelings and then move on with living. I hope I have encouraged you Vitaly that life isn't over with the PLS diagnosis...you have come to a Y in the road...After stomping up and down letting it all out how you feel inside....think about your options and choose...All the best! Frizz

 

[Zaphoon]

Vitaly, I am sorry you've been diagnosed with PLS.

One thing is for sure, if you keep yesterday in mind as the worst day of your life, things can only get better.

I'm waiting on MRI results to tell me I don't have PLS (we're kind of hoping for a pinched nerve here).

You are among very good company on this forum. I'm certain that given time, you will be able to encourage many that will be coming into you shoes in the future.

Don't let the disease keep you down. Meet the thing head on! I'm pulling for you!

Zaphoon

 

[kevinw]

Vitaly & Frizzel

Vitaly...sorry to hear of your diagnosis, the emotions the first few day's and weeks can be very hard with your mind racing about what's going to happen. One good thing is you found this web site and it has some of the most amazing people on here. Do not be afraid to type about what is upsetting or about what you think you might be feeling. Nobody in here is a doctor, but I think you'll find you get a lot of replies as to if you think something maybe a true symtom.

Frizzel...I would have to answer "yes" to your first three questions in your sentence and the cold weather has a big effect on each of those symtoms for me. The only other thing I could add to that sentence, and it's really just a result of those issues, is the lack of balance that is a major problem for me.

 

[Frizzel]

Singin in the Rain

Although I can no longer sing, I like to think I can still mayke a joyful sound. lah laaaaaaaaah!

Our daughter gave me a plaque that says,

Life isn't about waiting for the storm to pass...
It's about learning to dance in the rain!

This is the legacy I want to leave for our children. Life is hard and even harder for some.

I have friends who have ALS and it is a shitty disease. They are my heros! Al and Captain Al...if you're reading this...you two are my heros! You both have gifted the world with your courage and concern...THANK YOU!

I like the thought of pulling for each other...maybe even starting a virtual cheerleading squad of people who are willing to cheer each other on. even if it's behind the scenes. Let's make it happen.

All the best for what we can muster up today!

Frizz

 

[sral]

Frizzel,

Great post!

Your daughter is very wise ... what wonderful words

"Life isn't about waiting for the storm to pass...
It's about learning to dance in the rain!"

 

[jenfuller2000]

i have PLS too!

i had had PLS since my late 30`s thats almost 20yrs ago i take many meds, i use a chair for any distance i travel otherwize i walk SLOWLY !

 

[Zaphoon]

jen,

Your post is very encouraging.

Zaphoon

 

[olly]

frizzel.
i have had mnd 9yrs and still going.
i totally agree with everything in your first post,you sound alot like me.

jen.
bless you,i know it has been a long tough road the last 20yrs.
i know others who have had pls over 20yrs but there spirit is still strong.

vitality&zaphoon.
you are only at the start of this (pls)journey.
i think and many long timers will agree,the early years are the worst.
once you are sorted with meds,got your head round it and made the necessary ajustments things get a little easier.
yes you will get worse gradually over time,yes there will be many ajustments in life along the way..........but with gods help and positive attitude you will both be here in 20yrs time.

 

[sral]

Caroline,

Thanks for your insight on the worst times ...
" think and many long timers will agree,the early years are the worst.
once you are sorted with meds,got your head round it and made the necessary ajustments things get a little easier.
yes you will get worse gradually over time,yes there will be many ajustments in life along the way..........but with gods help and positive attitude you will both be here in 20yrs time."

Something clicked when I read this because my days have been bothered with the worse that's yet to come. I had not seen this earlier (3 years now) deterioration as the worst. I only kept envisioning the increased disability as increased woseness (I know this is not a word)!

Jenn,
God bless you! 20 years - you are a true tropper. I'm in my mid thirties now and I couldn't imagine how this would impact things. These days I'm so anxious and get twitching all over and think the worse. The Dr says it's just my stress and anxiety (I really need to do something about that). Anyway, you in your 20th year and still going strong are an inspiration!

 

[olly]

isral

on a pls forum i was on i found those who had pls for 10-20yrs were more positive and full of life.
they supported those in the early stages more.
those in there first few years of pls seemed to be in the most pain and increased disability.
maybe after a few years of meds it settles it down,you start to get plateau's,you adapt and ajust so dont notice the slow increase in disability.
i think all three of these are involved in someway,especially in my own case.
its like a scarey train ride through a black tunnel at first,then you see light at the end:-D

 

[sral]

Thanks Caroline

You're right - probably the most noticeable disability happens in the first few years. People go from being normally mobile to being disabled and this is a scary HUGE change. As years pass and they continue to progress they become slightly less mobile than the less mobile state they were already in.

I never thought about it like this before. Thanks for opening my eyes.