twitch with pls?

[awieleba]

Thanks,

lets go with your gut! And yes, compared to the people on the post I am doing OK. It just gets worse not better. we will see where it goes and in the mean time I need to have fun! I see my neuro on aug. 27th and I have muscle biopsy in 2 weeks. I will let you know........................

 

[sral]

April,

I'm so surprised that they are doing a muscle biopsy. You have no issues walking or using your legs or arms or any other limb. The weakness is more felt than it is visible. What's the biopsy suppose to check for? I ask this because it sounds so invasive.

 

[awieleba]

sral,

They are looking for myopothy or mixed connective tissue disease. I think they can tell the difference b/w any? I can walk BUT my left is not good. I walk more leaned back on my hips, like my leg or front of thighs cant bear wieght. My left leg is stiff when I walk. My lower leg is in pain. The problem use to be only once in awhile, then once a week, and now it is everyday that it aches from walking. I think it is from the muscle loss. Yes, I can walk but My leg is getting worse not better along with my hands and wrists.

so, we will see. It is invasive, I just want to figure all this out and it seems from alot of people on the site that it may not happen.

take care

april

 

[sral]

Dear April,

I wish you the best. It's wonderful that with all those leg complaints you are still able to go for walks with your children.

I think my mom has not been diagnosed properly either. It's been almost 3 years that her symptoms started. She can still do everything but with effort. Her speech was first impacted and then her legs 18 months later. She can still walk but has difficulty going up and down stairs and her balance is not good. She really needs a cane but refuses. She uses the carts in stores to assist her. If you give her a cart for support she can just move faster and more freely.

Again, wishing you well.

 

[awieleba]

thanks!
I will walk with my kids untill the day I fall down or my legs give out. Yhere is no other choice. the kids keep you going in body and heart............

All things considered, it sounds like your mom is doing fairly well?

 

[Zaphoon]

April,

Your condition sounds a lot like mine. I, like you, had 2 emg's within 1 month but thats because my neuro referred me out to another for a second opinion. No lmn damage noted on the emg's. I have very brisk reflexes, spasticity, fasciculations but also atrophy in one arm that may not be related to everything else (probably isn't). The second neuro wants to see me 4 months after last exam to see what has developed. Oh, he voice! Yep, it goes out now and again, too. It gives me more reason to talk less although there are times when I'm called on to do public speaking. My next speaking engagement is this coming weekend and I'm hoping my voice holds up. I have to fill 20-25 minutes of time and well, it looks dubvious.
Anyway, the point is, I seem to mirror your symptoms and it looks like I'm on a schedule to see the neuro in what looks to be 4 month intervals. I'm also loosing weight and I guess they're concerned with that aspect of my presentation as well. We shall see.
And, it may be something like a neuropathy, myopathy, brain zit, who knows?

Zaphoon

 

[awieleba]

zaphoon,

well, I get the results of my biopsy on wednsday. My leg(s) were the problem and it has no spead to my arms. my hands have been achey for awhile but this is a new feeling of weakness. I thought I knew what weakness was and i did not becuase this is weak. I can drive and grocery shop etc. but it feels soooo strange and weak. Like my arms are rubber or bruised. I am more freaked out by this new symptom than the legs. I can still walk around and my legs are ok (alot of twitching and muscle loss but still walking with no problems) the arm thing? I hope passes and is not any worse. I have thinning muscle in b/w my thumb and finger (classic als) but had a clean emg an hand? kinda strange all this.

what are your symptoms?

Take care,

april

 

[awieleba]

opps forgot to say I lost a lot of wieght and then 10 pounds in 1 week! So I went on lexapro (this helped alot) I could not eat from anxiety (I did not think at the time that was true)...well, I have gained back 15 pounds and I am not fitting into any of my clothes! Well, cant exercise either, so I am in a bad spot. IT is bad enough to have all this going on, but now I dont fit in clothes? sad. But my calfs and thigh and hands with forearms with face are still thin. So body is strange right now. I dont care as long as I can be here and functioning. Just dont have anything to wear....sorry.....I am such a girl....

TC,

april

 

[Zaphoon]

I've had weakness in my upper r arm for a few years but I put that off to moving too many pianos. This is the arm with the atrophy in the teres minor muscle. Late last year, I noticed going upstairs was taking a lot more effort. Legs felt under an unusual strain. I also noted a lot of stiffnes in my lower back and legs last year. I'd try to bend down to lay my toolcase on the floor and one lady remarked I looked like an old man. Fast forward to about 3 months ago and I noticed the twitching (fasciculations) and growing weakness in my left arm.

If I sit for any length of time in a chair or car, the stiffness sets in and it takes a few steps to work it out. Mornings are the worst. Lower back, neck and legs very stiff. I have to put my hands on my knees to raise myself up out of a recliner. My voice goes out if I speak for very long. Lately, I've noticed I'm clearing my throat a lot. And I've lost about 9 lbs over the last 8 months. It has been a slow, gradual, weight loss and I'm thin to begin with.

Getting in and out of low sitting cars is difficult. I can't lift anything over my head and pushing things to the side is difficult. Upper arm strength is toast! I would think my progression is too fast for PLS and lacking lmn involvment to be ALS. MRI was clean and blood work has ruled out a plethora of others that only the neuro knows.

Thats my story! Thanks for the query!

 

[olly]

zaphoon

you sound alot like me.
pls can progress quickly in the first few years,i know my first couple of years were really bad like alot of people i know with pls.
i have had mnd 9yrs now,after a plateau period from the first few years ,2yrs ago things started to progress more again.
i have a diagnosed of mnd,no definate pls/als.
i have umn but slight lmn that does not seem to be progressing too much.
some of us are the odd ones out.
take good care.
caroline:-D

 

[xina]

i have PLS diagnosed and i have twitches. i get them in my upper arms once in awhile. most of my twitching occurs in my legs.

HI to you all!

I normally post on the other als site. I just wanted to ask if any of you with pls get minor twitching? I seem to have alot upper motor nuron symptoms (brisk refelexes, tight muscles that ache,fatigue,throat issue-hoarseness) and have 2 clean emgs (both were with in 1 month). I am going to the als clinic in my town.

I feel that my muscles have shrunk so to speak. I think a may have a slight atrophy or thinning around my left ankle.

Anyway, something is wrong and I have been fearing als, but I thought maybe pls with my clean emg and some upper neuron signs.

what exaclty are lower nueron signs, i think I have those too. not sure.

thank you all sooo much!

April

ps~I have no muscle cramping as of yet. I have been dealing with this for about 6-8 months but was not really noticing prior to that, I was pregnant and wrote everything off to that.

 

[awieleba]

thanks Xina

 

[sral]

My mom has upper motor neuron disease and she has no twitches.

I do not have any motor neuron disease and I have twitches. I get them daily everywhere but more so in my legs. The doctor said it is normal. Twitches can be normal, but I understand the concern for someone who has motor neuron disease.

I just wanted to show how common it is to get this.

All the best

 

[awieleba]

thanks sral,

twitching just seems bad when you have the other onset of symptoms with it.

Zaphoon,

I have the lower back thing and feel stiff! Even when I just run errands my low back hurt, that is why I was suprised when the mri came back fine. I Really thought it may be that as I was in a BAD car accident when I was 8 I/2 months pregant. The exepedtion was totaled and they hit me 50 mph on my side of car. very scary. SO I thought maybe that. * my neuro told me that myopthy will show in emg as will MG. I thought maybe I had one of those, but she said no. (she said 10% of time it wont but other things will show) And my biopsy ruled out thoses one's also. I have given up and will wait 6 months and get my emg again....

SHe said she has pls pts and I dont "look' like them.....I dont know what that means

TC,

april

 

[sral]

April

I don't know what to say. The good news is that the EMG was all clear.

Who knows if something did infact go wrong when you had the car accident and no one is able to pick it up. Stiffness is very common after a car accident especially as severe as you described. Then again, you had mentioned that a similar type of weakness had happened when you were younger and so this is not a first. Hoping this goes away like it did the first time. You're probably more tired today than you were back the first time with 3 kids and a new baby.

Wishing you well. Sorry I don't have any answers.