Told today it appears I have PLS

[dank]

I received a phone call from my doctor today telling me they have ruled out all other possibilities for the weakness in my right leg and he states I have a degenerative muscle disorder that he believes his PLS.

The weakness in my leg began about 3 years ago and has gradually gotten worse, acting as a drop foot at first but becoming weak in my entire leg.

I am 35 years old and otherwise healthy. I have no other symptoms at the moment with the exception of my right leg.

Looking for some feedback on what I should expect and how to best cope with this. The doctor has left things now at the are "monitoring" me...which feels like they are doing nothing other than waiting for me to get worse. I asked him if the time table for this was more like 2-3 years or 10-15 years, and was told it was "probably somewhere in the middle".

Any insights anyone could offer would be much appreciated. :?

 

[Al]

Sorry about your diagnosis. Welcome anyway. I'd go with the longer estimates. We don't have a lot of PLS'ers partly because it's kind of rare and also slow moving so they don't tend to have lots of questions. Feel free to ask though and use the search feature above.

AL.

 

[Jim Mulligan]

Hi Dank,

Unfortunately, "Doing nothing" is pretty much all they'll ever be able to do for those of us with PLS. Your doctor my prescribe Baclofen for the spasticity, but that won't impact the course of the disease. Feel free to change your diet, visit an acupuncturist, visit a Homeopathic Healer, visit a faith healer, have your amalgam fillings pulled, sleep on an inclined bed, have your veins ballooned...

PLS usually progresses slowly. It's been about eight years since my diagnosis, and I can still walk...well, not really walk, lurch around, and I sometimes need a wheelchair. But I can still use my arms and hands and can eat, talk, etc.

35 is on the young side for PLS. I'm sorry about that.

Some people here look at the alternative... lower motor neuron disease (ALS), and feel that in comparion, PLS isn't that bad. It all depends on your personality and how you look at it.

There are some very chipper people here who can lift your spirits.

-Jim

 

[AKmom]

Hi Dank,
Welcome to the group but sorry your unfortunate circumstance is what has brought you here. I started with weakness in my right leg about 19 years ago. Although the cramping spaticity was before that. It has slowly progressed to effect both legs, hips, back, arms, hands and sometimes I think my tongue and neck are getting into the act too as they will spasm for no reason and when I am too tired I drool and slur speech slightly.

I just bought my first power chair for when I have lots of walking to do, but I can still walk. I use two canes when I am out of the house because I am more prone to falling outside in unformilure turf. I have AFO's to help with the drop feet. I use braces for my wrists and thumbs so they wont go out of joint when I use the canes and when I do my work, which is a photographer. Although the camera is getting heavier, I make compensations all the time, like using a tripod when I normally wouldn't.

I was in my thirties when my weakness started, it took until I was 50 before someone finally came up with a diagnosis that actually fit all the symtoms. So you are lucky to have an early diagnosis (not lucky to have the disease), because you can study up on it and learn to live life to the fullest with it without having to continually go through the same tests over and over not really knowing what is going on. I could have bought a mansion with the money that has been wasted on so many 'specialists' and useless repeating of tests.

Ok...well jump on in here and if your comfortable in telling us your story about your new adventure (having PLS can be an adventure with a little imagination, your the hero that has to overcome the PLS monster and not let it take the 'real you' away), please know that we are listening and here for you!

 

[olly]

hi dank,welcome to the forum:grin:
theres not much written about pls as its so rare but its said life span is 20-25 yrs after diagnosis...............but that is sooo outdated and refers to 50+age group developing it.
so,if you look after everything else health wise then life span is pretty much normal.

other than meds and physio if needed theres not much they can do.
as time goes on you learn to manage pls on your own,know your limitations ect.
considering other deseases out there pls is not that bad......honestly.

i was 31 when i developed pls,i am now 43 .
can still walk round home and little bit outside to a fashion,like akmom just got a mobility scooter for outside.

i have lots of info and sites if you need anything.
dont be afraid to ask questions,we are always happy to help and support each other.............you are in the right place.

take care,caroline.:-D

 

[Zaphoon]

Hey there, Dank!

Welcome to the PLS'ers! The literature I've read says it can take decades to run its course and some folk wind up only having to use a cane (I'm on this track). Others, well, not so lucky.

I'm doing what is becoming an annual wean off of baclofen to check on the true nature of my spasticity and I'm just about there.

If the neuros do their job, they'll watch you for 3-5 years to monitor you for lower motor neuron involvement. Let us hope that never happens.

 

[Alyoop]

Hi Dank, as you can see, we are all a bit different, but most of us are just waiting. I have been diagnosed with possible pls since last year after 3 years of foot drop in one leg and weakness in my hips. I have progressed very little since diagnosis, except my other leg has now developed spasticity and is worse than my " bad leg". In terms of disability, I have only worsened when going up inclines, can just manage 1 flight of stairs with difficulty, but on the flat I just have a slightly weird limp, so not using any aids to walk. I am going to have serial EMGs. Well I have refused them since diagnosis, but have agreed to have one in 6 months. This is to check for any LMN issues that may have developed.

I am at a much better place than I had imagined 3 years ago, so I am thrilled that it is so slow in it's progression. Once you develop an understanding of ALS, as Jim said, you realize just how hard it can be for others, and it helps you keep pls in perspective. That does however take time, and I am sure most of us have gone through our own grieving processes before reaching a place of relative contentment.

One bit of advice I had from my husband, is to do as much as you can now, traveling, enjoying mobility, just incase things change. Then you don't have so many regrets. If you don't progress or progress very slowly, you have lost nothing. If your progression speeds up, then it's good to look back and know you did all you could.

Ok soppy crap over, welcome, and ask away.
Aly

 

[dank]

Thanks for the feedback. I can already tell I'm in good company, which is encouraging!

My 1st follow up to "monitor" is July 27th, so I want to go with lots of questions now that I have had a bit of time to digest things. Are there diets, exercises, etc that are recommended? Does anyone have any questions they could recommend I ask?

The hardest thing to swallow so far is that I have 2 little girls, a 2-year old and a 2-month old, and thinking of being in a wheelchair (or worse) for their formative years has been really unsettling. I've felt pure sadness about what this could potentially put them and my wife through. I feel like I'm able to keep a positive attitude and deal with whatever comes, but the thought of becoming a burden to my family is very sad to me.

The news is still less than 48 hours old, so I'm still trying to register all I can....but I did want to thank those that have taken the time to reply.

Dan

 

[seanmucci]

Hi Dank,been slow and steady my self for several years , patience is needed my friend which i believe you have! you are not alone as st.paul said cast down but not forsaken!

 

[KissJ]

My husband has been diagnosed with ALS (May 2011). I've read about PLS and have been praying that he can be diagnosed with PLS! It is my understanding that you have to be observed for a couple of years to determine if it is PLS instead. I pray! You have been blessed with PLS instead!

 

[Tokahfang]

I've raised a niece in a wheelchair her whole life, they do fine. It's the rest of the world that seems weird to them.

Welcome to the club. We have no cures, no disease-obligations, and it progresses slowly. It's not a bad gig, there's lot's of life out there. (I've actually done far more exciting things IN a wheelchair than before it.) Also, the club members are pretty nice folk.

One thing to do, actually - learn a lot about PLS. It is very rare, so outside of neurologist, none of your docs will have heard of it, and you'll need to be able to explain it. And if you do end up using a wheelchair, make up a cool story about why... mutated tomato attack, maybe? Have fun with it. =)

 

[AKmom]

Dank, Exercise is important to keep moving however if a muscle is dying, there is not much you can do to build it back up. However you can over do easily too. In my case, I find if I exercise, like swimming or walking on a treadmil for 10 minutes, I use up my days allotment of energy. With weakness in muscles, you get fatigue because your healthier muscles are working harder.

Of coarse early on in the desease process, I pushed myself too hard and was always on empty, and sometimes I couldn't get up for a whole week. However I have learned to pace myself. Remember that I have been dealing with this for about 20 years, so my desease process is further. I am to a place where my tendons cannot handle the strain of me pushing the muscles. Like the time I really tried to open a jar and ripped all the tendons in my thumb. Or the time I used my cane without a wrist brace and messed my wrist up. I have done the same with tendons in my legs, especially around my knees when walking upstairs.

Now I am unable to do many of the things I use to do. But I have come to grips with it and do not wallow in self pity. Its hard to say goodbye to another thing lost, but I praise my maker I am still here and can still be a positive influence on my lil one and other people in need. As for diet, always eat a healthy one and try to maintain a healthy weight. This is where I struggle. Not that I eat unhealthily, but rather as I got weaker and more into the desease, I started gaining weight when I couldn't exercise as much. Now I eat once a day and usually take in less then 1000 calories a day. My weight has been going down about a 1/2 pound ever month. Not fast because I cannot do the exercise anymore. If I were able to get up and do a cartio I would and it would knock this weight off me in no time.

So in answer to your question of exercise and diet, yes they are both important, but be realistic about it in regards to what your body with PLS can handle.

 

[olly]

so true kissj,i read about our fellow pals and think i have nothing to complain about with pls.

joyce,untill reading your posts here i never realised how much further along in the disease process you are compared to the rest of us.
the fact that you have only just got a motorized chair is a huge achievement.

i wish i could exercise ,even swim a little but i physically can not do it.
i am 2st under wieght and really need to put some on but its just not going to happen,i am a healthy eater not much of a sweet tooth and wont touch anything fried or fastfood.
my general health had deteriorated over the past few years,lots of colds,flu and chest infections ect............this i know in part is due to being underwieght.
i think like with pals we do fare better if we have adequate amount of wieght on.