DX from PLS to ALS

[brendapals]

caroline,
I'm so sorry about your aunt, I pray she doesn't have any pain during this time of her life. Please rest yourself and know our prayers are with you,
brenda

 

[Al]

Caroline, I am sorry to hear about your aunt. I lost my sister the same way a year and a half ago. Hopefully she will have medication and not suffer long.

AL.

 

[olly]

sorry

first of all thankyou bill for your pm,bless you i did not direct my outburst at you or anyone else.

yesterday was a really really bad day,with my own health going down hill,family/financial problems then getting the news about my aunty dinah last night i am finding it hard to cope.
my aunt is the sweetest person you could meet and would do anything for anyone.
my mum is devestated as she lost her mum when she was 10yrs,my aunt as the oldest was like a second mum to her.
my aunt has been very ill for at least a year,contracted ecoli in the summer that nearly killed her then they found something on her brain and abnormal blood count.
they said the seizures were from the antibiotic drip she was on for weeks,sent her home with meds .
only a few weeks ago did they question the blood count and did a lymph biopsy then revealed lung cancer,the tumor on her brain is secondary.
i am so mad as they have messed about and left it too late,today she goes to see how long she has left,maybe only weeks.
my local hospital were i go is really bad,poorer countries have cleaner better hospitals.

we all have our own problems and burdens to bare.
i always try to put myself out for others but as someone said to me yesterday i need to think more about myself for a change and not stressing over other people.
it may sound selfish,i have never been a selfish person but i have finally realised i can not stress over others when it is effecting my own health.
sometimes i need help and feel totally alone.

 

[Mr. Bill]

I understand completly how you are feeling. I wouldn't say it's selfish at all, one does have to take care of themself.

I hope everything goes as well as possible for your Aunt. I hope that you start feeling a little better.

Take care

 

[sral]

Dear Caroline,

It seems that when it rains it pours. You had mentioned awhile ago that your dad's health wasn't the greatest either and you were worried about him ... and now your aunt - your MOM has alot on her plate.

Stress is not good for anyone and especially not for someone with motor neuron disease. You are not selfish for thinking of yourself. You are doing what it takes to keep going.

My prayers are with you my friend. Hopefully the New Year will bring better things!

 

[MtPockets]

Caroline,
I know it does not help, but know that we all are going through really unusual times right now. It gets to where I am concerned about even answering the phone. You never know what is next.
I do not need to bore you with the details of all the junk going on, just wanted you to know what is happening to you right now, you are not alone.
We as a family of the Forum join together with you in our prayers that we all may make it through all that comes our way.

Philippians 4:13,
I can do all things through Christ which strengtheneth me.

 

[olly]

thankyou everyone, i suppose i just needed to get things of my chest so to speak.
sorry bill for taking over your thread.
my dad is doing quite well in that there has been no further mental deterioration for some months now,the cyst on his brain is not causing any symptoms so that is good.

al,i know what you mean. my son is out of work and he has tried so hard but there is nothing,our town has been hit hard with the recession.
i am keeping us both on the bit of disability i get,moving home has not helped financially.
my mum reminded me yesterday that faith is so important during these hard times,mine has hit rock bottom over the last year.
my mum has a very strong faith as a jehovahs witness(no door jokes please:lol,i was brought up as one along with my siblings.
i know i am not happy without my faith,this is something i need to work on.
i just find it so hard to cope with all the suffering in the world.

thankyou for letting me moan,i dont like to as i feel guilty when there are so many worse off.
feel free to offload on me anytime.
lets hope 2009 is a little better for us all

 

[JerryandGerrie]

Hi Bill,
Funny, both of us have been using the U of M. Is your's in Worcester? My original diagnosis was ALS but now it appears more likely that I have PLS. I am still to strong for an ALS diagnosis (thank God), my blood pressure doesn't drop when I go from a sitting to standing to have a MSA dianosis (Multiple System Atrophy), and do not respond to Carbidopa/Levidopa, to have a Parkinson diagnosis. I recently came across PLS and it appears to fit my symtoms at this time. I will leave the future diagnosis to the future.

 

[JerryandGerrie]

New Boy on the block

Hi Bill,
Funny, both of us have been using the U of M. Is your's in Worcester? My original diagnosis was ALS but now it appears more likely that I have PLS. I am still to strong for an ALS diagnosis (thank God), my blood pressure doesn't drop when I go from a sitting to standing to have a MSA dianosis (Multiple System Atrophy), and do not respond to Carbidopa/Levidopa, to have a Parkinson diagnosis. I recently came across PLS and it appears to fit my symtoms at this time. I will leave the future diagnosis to the future.

 

[Mr. Bill]

JerrieandGerrie,

My U of M is the University of Minnesota. I'm becoming a believer that there are so many different variations of ALS that the Drs. aren't even aware of them and all their symptoms. My Dr. says that there are a lot of Drs. that think PLS doesn't exist, it's just a benign flavor of ALS.

I think you have the right idea, a diagnosis is just a name for what's ailing you. Accept it and keep living life one day at a time. I know I had a tough time no spending my entire day going through all the what-ifs.....it doesn't pay. Enjoy life.

 

[Judith]

I have been thinking about the PLS diagnosed also. I've kind of come to the conclusion that there is no such disease, it is really a variant of ALS that just starts out affecting only UMN's and then eventually goes to the LMN's.
I have been diagnosed with Bulbar onset PLS since 2004 and now in Sept. of 2008, LMN damage is being seen, which is going toward ALS.

Judith

 

[Mr. Bill]

Judith,

I concur completely. We were diagnosed in the ssme year.

How are YOU doing at this point? Are you still maintaining your mobility and everything? I can do most things pretty much but I can't do them for long.

When you do do things do you end up paying for it? I can make myself do things but it ends up not being worth it. It's hard to explain and I'm not doing a good job.

Good to hear from you.

 

[sral]

Judith/Bill,

Even when diagnosed with PLS, my mom was told that it was a variant of ALS. The longer there is no LMN involvement the better chance it does not become ALS. However, the Dr did say that even if it does turn into ALS it won't be as aggressive had it been ALS from the beginning.

What type of lower motor neuron symptoms did you start seeing at the 4 year point? Was there much progression evident from year 3-4?

My mom has bulbar onset PLS for exactly 3 years now. I know that with bulbar the key number of years is 5 before you can truly call it PLS.

Judith, how many limbs after bulbar were affected within the 3/4 year period?

Thanks.

 

[Judith]

Bill/Sral,

My Bulbar onset was in Feb. 2004. It wasn't until Jan. 2008 that I started have problems with my left leg. And then in March 2008, problems occured with my left arm. I had another EMG test (on the left side only) in Sept. 2008 and that's when LMN damage showed up on my limbs and thigh area, but not in the bulbar area. (That seems strange to me). My neuro said the LMN damage was a "low number", so if wouldn't qualify for a reclassification to an ALS diagnosed. I don't know what the number has to be!
I feel like my leg and arm have progressed more rapidly than when my bulbar started. It's only been a year from walking fine, to barely not being able to walk at all. I am left handed and can barely write anymore. I bought a cane, but don't use it. It doesn't seem to help with balance. I have to concentrate on every move I make, so it is cumbersome too. I have looked into quad canes. Maybe that will be better.
I fall quite frequently. If there is a wall or furniture, I always hold on to it for balance. My husband holds my hand when we go out and if there's a shopping cart, I grab hold of it. Shopping carts are a God-send!
My energy was normal until July of 2008. Now, I get fatigued very easily. I still do most of my chores around the house, but have to break it up and do a little on one day and then more on another day.
Yes, Bill, I have done too much and paid for it for about 2 weeks! That was in the beginning when the fatigue started, and I've learned not to push. I use to excercise, but that is too trying for me now. I'm praying my leg and arm will reach a plataue, like the bulbar seems to have done. I dread thinking about a wheelchair.

Judith

 

[sral]

Judith,

From Feb 2004 to Jan 2008 your only symptoms were bulbar? Wow! You mentioned that your speech plateaued. Does this mean you can still speak?

My mom has had bulbar onset since Jan 2006. 18 months later her legs started (prior she only had knee and leg pain). Todate her walking is not good. She too uses walls and furniture for balance I guess. However, in mid October she did an EMG and it was okay. Even though she had difficulty walking her EMG was normal.

She continues to progress every day and complains of pain. Recently she said the pain is now in her chest too :sad:

Thanks for sharing your experience