Need to start a new thread about pls

[SpringOwl]

Hi, my name is Amy and I live in Michigan.

I belong to the Patients Like Me website but there seems to be more in-depth information here. I started this thread because I have not figured out all the navigational aspects of this website and am typing on an iPod touch so I am afraid I will lose battery power by the time I figure out the ins and pits of this site.

I have been reading the posts on the Pls forum and some I can really relate to and some I cannot. I would like some input of your experiences with PLS.

I am on my 4th year of walking problems but in the past 15 months my spasticity has really increased and I now have a lot of pain. I cannot tolerate baclofen. Baclofen caused cramping, increased spasticity, and incredible weakness on the lowest dose of 10mg. I hated it and it is ticked away in a kitchen cupboard.

I use generic klonopin and vicodin and sometimes it helps and sometimes it does not.


I have had 3 clean emgs in the past year along with 3 clean mri's in all arras of spine and brain. Bloodwork normal.

I have fasciculations and left side atrophy of leg, arm, butt,hand. It's like I am split down the middle.

I have drop foot on left and left arm and hand just about useless.

Do any of you with PLS have any atrophy? I see some of you festive fasciculations.

How can my emg be normal. Tonight I have been obsessing about the loss of muscle between my thumb and forefinger (another hallmark symptom of ALS)

I have had my emgs performed by the directors of ALS clinics. Could this mean my ALS is just not showing up yet.

Please share your thoughts about atrophy,fasciculations and PLS. Also if any of you use a baclofen pump please share.

Thank you for reading.

Amy

 

[SpringOwl]

Trying to edit for spelling. Ins and outs not pits.
and not festive fasciculations.

I will figure this out.

I am slow in more than just mobility!

Oh I see the edit button. I think I need an iPad. iPod is too small for me

 

[joelc]

Welcome to the forum. Sorry you have had to find your way here but it is a superior forum to the one you mentioned.

PLS affects only the UMN's so an EMG will not show anything if it is done on your limbs. It will show something if done on your tongue and jaw.

There are other diseases that can cause atrophy of muscles that are not ALS or PLS. I hope you find that.

If it was ALS then an EMG would show problems before you noticed any weakness, and you notice weakness before atrophy.

Others need to jump in and offer their thoughts.

Visit my website and click on Definitions for more insight to what might be causing your problems. Living and Surving with ALS

 

[peter57]

Hi Amy,

I have a pump. Does it work, I dont know.

I have a thread here called "baclofen pump trial / use". just do a search for it in the search button on the bar at the top.

another member here, Maxmurder is also looking at one.

cheers
Peter

 

[tdamess]

spring owl - you are right there is more communication here , i love it here ... i do not have als my son has it and between the thum ans pointer finger is whehe he first noticed something wrong his muscle was gone , but his emg showed the als .. i didnt know that was a tell tail sign .. wishing you the best of luck for it to be something else

 

[Zaphoon]

Amy,

Welcome to the forum! I thought I recognized "Spring Owl" from somewhere!

I take baclofen and gabapentin. The dosages were prescribed at starting with 5mgs 3x a day increasing to 20mgs 3x a day with bacofen and with the gabapentin starting with 10mgs 3x a day increasing it to 30 3x a day. It proved to be too much at the maximum levels, having an effect of walking through pudding all day. I cut back on the baclofen for 2 reasons; I was shorted on my refill and didn't like the feeling of walking through pudding all day.

I have really strong fascics in my legs in the morning (lighter during the day - all day) and sporadically in my arms and stomach. I've had these for the past 2.5 years. It's been that long since my EMG's and MRI's were done. My wife and I went to a dinner/dance fund raiser last night and my legs were telling the tale (not as much stamina as there once was).

I have atrophy in my right shoulder but this has been blamed on a bad case of frozen shoulder syndrome. One neuro suspected that PLS had something to do with this. That shoulder has never fully recovered.

If it wasn't for having pathologic reflexes, I'd probably just have a a nasty case of BFCS.

 

[Northern Dancer]

Hi,

I have been diagnosed with PLS which I must have had for ages because I really can't remember being any other way. I am not sure how helpful this info will be but honestly I have never had anything other than just a web between my thumbs and forefingers so I can't imagine recognising muscular atrophy there.

 

[johnnyliverpool]

zaph...good point that..the web and fore finger..how would you know?...wheres the muscle?.................puzzled johnny!

 

[Alyoop]

You can indeed get atrophy with PLS. but it is usually from lack of use. I have a smaller thigh on the left because thats the side of my foot drop and I have uneven leg action. My right leg works harder. I have atrophy in both feet as well, but who knows whats causing that? I have a clean EMG or should I say several. I did have an abnormal EMG when I had my first one, but strangely it was different with a different doctor doing it?

PLS type symptoms can be a precursor to ALS in some cases, just a slower way for it all to start. You can also have UMN dominant ALS which is a recognised MND. That would show predominantly UMN signs with some LMN signs.

Welcome to the forum its nice to chat with you
Aly

 

[SpringOwl]

Thanks Aly and all for the reply. I read from this forum that atrophy and fascicultions would show up on emg and my left hand is so bad I am surprised it didn't show up.

I go back and forth in my mind that it doesn't matter anyway because what will be-will be and other times I begin obsessing about everything. This is all such a mind trip!

The only thing that comforts me is hearing about others with strange problems. I miss my legs although I can still walk a bit but I really miss my hand. The atrophy really scares me. I began squeezing a squishy ball to exercise my hand but fascis started ramping up so I stopped.

Thanks for the input, it really helps!

Amy

 

[AKmom]

Amy, welcome to the group!

...like you I go back and forth between saying it doesn't matter to being obsessed with it. It can be a mind trip. I also have some atrophy, in my hands, feet, shoulders and lower calfs. My last emg did not show my fascilations but I didn't have any atrophy showing at that time either. At the end of March I will be going in for another emg and be re evaluated by docs at Mayo clinic. We shall see what comes of it.

I also get the spastic cramps in my hands, feet and elsewhere in my body. Baclofen has helped greatly with those as I don't get them as often now. The thing I noticed with the baclofen is that when I am in between doses and getting close to the time to take it again...I have a spike in the spasticity and cramping. Its not that the spasticity is getting worse because of baclofen, its because when the baclofen is working you are less spastic..then when its wearing off, your body all the sudden is back to its spastic self and you almost think its worse than before.

At least this is what I am figuring. Might not be so...but I notice now that I have a baclofen routine down, my overall spaticity/cramps are down.

 

[Alyoop]

If the spasticity and weakness you have, is caused by UMN problems, and you are therefore not using your hands as much, then you could have atrophy. This would not show up on your EMG. Fasciculatiuons can be a bit hit and miss on an emg and then they can just happen to stop while the needle is in. I have had some fasciculations show up but only twice and once was in a muscle that I had never ever felt a twitch in. Most people with ALS do not seem to feel the twitches. Fasciculations on an EMG without Denervation are considered a normal phenomenon. In fact the neurologists seem to like telling you all about there own fasciculations, which I find quite amusing. I bet they poked themselves with needles when they felt them !
Like joyce said, most of the time you can just get on with your life and stop ruminating on the symptoms, but occasionally, the worry and doubt rears its ugly head again.

Aly