PLS ? Just plain weird

[Guest]

I was thinking today, what a strange condition PLS is. Some people are told they have it, some people are told they " might" have it, others are told they have it, then told they don't. Then there is the bunch of us who are told we possibly have it, but we don't believe it, and the other bunch who are told, you definitely don't, but believe they definitely do!

Confused yet......... Well the whole thing is so darn confusing.

Today, I went for my swim. I swam 1 km and was not out of breath, so I must be pretty fit. I only stop when my weaker arm doesn't clear the water anymore, so I get a lung full and start coughing ........time to stop. I have out swum most people at the pool and feel invincible. As I walk up the ramp and leave the grip of the water, I get heavier and heavier.....you know the feeling. I limp over to my swimming bag, get changed, get in car parked in disabled car park, go home and don't make it up the one flight of stairs without a rest...............

What a weird condition.

 

[Guest]

yup been there done that only I wasn't swimming...I was washing a horse! And I couldn't even get out of the car when I got home...had to have help. Its a completely weird condition!

Rest up girl!

 

[Guest]

Wjhat gets me is be3img in linmbo.....juswt gice m a mame & be dom e witjh it.

 

[Guest]

I liked your idea this morning about us all getting together to give this syndrome a name. So it can be the JKA syndrome, discovered by us ( Joyce, Kimberly, Aly syndrome) or JAKARss syndrome ( Joyce,Aly,Kimberley,Arkallen syndrome)
Get it Jackass, ha ha gotta get off the wine. Actually I am not drinking, really I am not!

 

[Guest]

Yeah, I got it! Hoe many nbottlse did U go thru 2 think up tjhat 1?

 

[Guest]

aly,water supports the body and its good exercise for those with disabilities it makes it easier to move..........we have pools at our hospitals that they use for rehabilitation for stroke and spinal patients.
having said that i tried swimming........i dont have the upper body strength to do strokes and can only manage 2-3 and my arms are exhausted also i can not keep my legs up,from the waist down my body just sinks,not sure if its due to weakness or i have complete hypotonia in my lower body.
i do know my body does not deal with gravity......gravity brings out the weakness i.e lifting leg to climb stairs,keeping arms up.
i did post a 0-5 weakness table a while back 5 being no weakness and i think the gravity thing was about 3.
only in hospital patients can have rehab in the hospital pool..........we do have a private rehab/gym were they do pool exercises for disabilies but its too expensive.

pls is indeed a confusing desease to diagnose..........really it all depend on the neuros and doctors you see.
i believe its not quite a rare as they think and theres many who are misdiagnosed with fibro and other conditions.

 

[Guest]

Aly, don't forget Zaphoon (Kim). His initial should still fit your new moniker. Aly, in New Z, do y'all add an R in that?

 

[Guest]

Well the Good Lord saw fit to bless me with a couple built in decent sized floaters that hold me up in water. I couldn't drown even if I tried! Swimming is a relaxing thing for me. I can only do a few strokes or kicks at a time because I fatigue quickly. I definatly cannot go out in the ocean alone anymore because I have a tendency to float out with the current and need to be pulled back to shore. But my hubby makes a good tug boat!

As for a moniker of what to call this whole desease process while the docs keep scratching their heads because they are afraid of the label Primary Lateral Sclerosis (oooooooooo...) We can call it SPASTIC Desease - Special People (with) A Spastic, Terrible, Infuriating, (and) Confusing Desease.

 

[Guest]

Love your arm bands and love the moniker. I thought I had a wonderful swimming stroke, my Hubby told me last night that i swim as weirdly as I walk! I was highly offended . I thought I could be the next Ian Thorpe, but clearly I was dreaming again! Ha ha

 

[Guest]

This may be a dumb question (I have a lot of them) HOW do they diagnose PLS?

I've been keeping this fantasy in my head that since so many of my signs are UMN according to the neuro that they will find it's PLS rather than ALS (she burst my bubble when her notes say there are also LMN signs) She said I have a spastic gait--I don't even know what a spastic gait is!

Does it show something specific on EMG/NCV?

Does hot water, like a whirlpool, make an any of you feel really good while you're in it--then like death warmed over twice when you climb out of the tub?

I can only swim under water ( nope, don't know why, I just can't swim any other way) so don't swim much--especially cuz I can't breathe, but a pool is the only exercise I can do that doesn't make me hurt more.

 

[Guest]

They find UMN signs and rule out every other testable option, then wait 3-5 years to see if you develop LMN signs.

 

[Guest]

Patty,
The EMG should be normal, perhaps the LMN sign she is talking about is the atrophy. It's a bit tricky, in fact impossible really to say LMN without the EMG. UMN can cause weakness, which in turn can cause lack of use atrophy. Fasciculations seem to be common in people with PLS, but I believe its more widespread and benign like mine are.

I was originally told NO ALS cause only LMN signs, then 3 years later....NO ALS cause only UMN signs .......go figure.

 

[Guest]

Ya know--I think it's a conspiracy--let's see how crazy we can make people trying to figure out what is wrong with them so we can drive them insane and feed them lots of drugs to treat the insanity we caused because we can't diagnose them.

Yeah--a tad over the top--but ya gotta wonder....

I can't remember what the paper said--but it disappointed me because I was hoping if it was all UMN it pointed more to PLS or MS with my typical PN from my diabetes thrown in for good measure and the odd blown disc.

Seriously, I'm still not sure I even want to know--if it wasn't for the fact I might be fixable.

 

[Guest]

I don't think I have PLS - it's just a bad case of BFCS with a Babinksi sign thrown in.

 

[Guest]

Hi Alyoop
Kitchener here, and I hear you big time, Just coming off an 8 km run which has destroyed my young office buddys (they're 30, I'm 40+ and they can't keep up with a 13 km/h pace). Feels good for now but what's next? Time will tell, but I would prefer to believe that I'm invincible until proven otherwise. I seriosly hope you can hold that candle as well. Good luck, Kichcener