Leg spasms a symptom?

[Alyoop]

After all these years, I doubt anyone here will be able to help you. If the doctors can't work it out, I doubt anyone here can.
Sorry for all your problems, it's horrible to have increasing disability and no answers. Very frustrating
Best wishes

 

[notme]

I just want to stop suffering like this. It's been too long of a decline. And I want answers. Pls, if y'all don't think it's A l s I will get outta here.

Kate

The only thing I can tell you with 100% certainty is that you should not need a scooter. There is something causing the issues. What that is...there is the question.

My reading seems to suggest that those with genetic ALS progress quickly. Those diagnosed young seem to as well. Look at Often Awesome. A very young man named TIM that passed from genetic ALS in a very short time frame.

ALS affects upper motor neurons and lower motor neurons. UMN issues are spasticity, cramps, pos bab inski, clonus, weakness, and other assorted issues. Oh, and weakness, can not forget weakness.

LMN issues cause weakness and pretty rapid loss of function due to the neurons dying. When they die, atrophy is the result. Always.

My thinking here is YES, see the neuro that wants to see you. Without a doubt, I would. Your issues sound UMN in nature, which can be a good thing, as progression, if it is ALS seems to be slower. There are other things that can cause UMN only issues as well.

You need answers. All this might end up being something fixable. You owe it to yourself to find out, I think. Let us know what the neuro finds.

 

[Hi Skyehy]

Thank you, notme. That was very helpful and patient. I didn't understand the difference between upper and lower damage. Is it lower damage that affects breathing, swallowing and does the most damage? I'm going to see Dr. Carlayne Jackson in San Antonio. So, I'm not so much worried about a l s anymore. Found out my dad (who passed) and brother also have or had leg spasms at night. Chalk it up to bad genes I guess. My brother isn't affected though-no other symptoms, I mean. Thanks!

 

[Hi Skyehy]

Notme, I tried to respond but I got moderated. Thanks for your helpful, kind attitude.

 

[notme]

In ALS, eventually UMN and LMN damage occurs. Basically, UMN is slower, if that makes sense. If you haven't seen a neuromuscular specialist, do so. MDA will pay for an evaluation if you are under-insured.

I've used a scooter for several years. My legs are spastic...I fall a lot. They look just fine.cthe issues in them are only UMN in nature. Weakness, spasticity, hyper reflexes and abnormal pathological reflexes. All signs of UMN disorder. What that disorder is remains to be seen. It can be much harder to diagnose as progr ession is much slower.

All other causes must be ruled out. And there are several...MS, PLS, spine issues, etc. A clean EMG means there is no LMN issues going on, which is a good thing. Patience is the key now. Keep on them for answers.

UMN and LMN both cause damage. They just present with different symptoms. For an ALS diagnosed, both must be present.

 

[aquarius]

YES! I have terrible leg spasms when I am in bed...they interupt my sleep...however, they are sporatic....they could stop anytime and not reoccure for some time.

Hang in there!

 

[buslady]

:shock::?:Hello sorry for your surfering and going thru all you been thru....I'm new to this site too.
I only came here because i thought some of my problems are "just" simular to ALS...and who knows I might grow and find something that I haven't to help me with pain.
Yeah, Yeah, I have all those things...documented I went to the MDA clinic this year...They scarch their little heads and couldn't fig out why when they shock my leg with those needles I didn't move? They called it inability to activate of the lower extremity distal to the knee which they went on to say maybe related to a disorder above the level of the anterior horn cells(such as Myelopathy, etc.) that is one part I may say. Also they only would look at my left leg only! which didn't make since since the first Neuro tested both legs...so was it fair? who knows....that is why God gave us more then one doctor right?

But for sure I have what I learn is leg and my feet & toes, and two of my fingers do a werid spasms. By the way I am not looking for you to play doctor for me either or anyone here.
But sometimes with all you go thru don't you just want someone to support you and what you maybe going thru? just a little bit? I think you need a big hug...so I guess I jump on to do that (hugs)! That is what I do for my grandkids and kids..it's what someone when I was young use to say, a hug makes it all better! I'm sorry that you are going thru so much and no answers.
I always think, "oh well maybe it's just that the doctor doesn't know!" what the heck.

The second part of their interpretation of my EMG test that day was this: given the normal motor nerve conduction studies and lack of abnormal spontaneous activity in those area. I cannot rule out the possiblility of "chronic denervation in muscles where motor units couldn't be activated! I didn't move when they shock the heck out of my left leg with those needles!

I was only looking for second opion...went to my first Nuro doctor who told us that he couldn't help me....Since nothing he gave me work as in pain med's....well I had a bad reaction is all. He started me out at the higher level..even the Pharm said so.
So what...I just look for another nuro type doctor. Get on little donkey get on....is what I say....
Also I have falling down problems, and I have a walker, cane, etc. I broken bones etc. Now what is like some of you is I got a scooter, because of the falling and the first Neuro said I had to stop falling down....like I can say ok now body stop this playing around and stop falling right? right!
I don't know how long, or how many years, I never seak any help....why I call what my falling down was "weak" ankles....left it and let it lay there...I had to work and yOU can't have that going on....
Well.......after a heart attack with a stent and being told I have COPD...without ever smoking is weird too....but I have problems like others breathing...I hate this hose...I hate the tank my Plumb doctors make me wear. yup I hate it all.
Now with my both legs going numb, doing the spasms, and burning etc...I lay in my bed at night an say....take me Jesus just take me.
I don't have ALS.....I don't know of anyone in my family.......of course they die years earlier....who knows? right....maybe Jesus does.
I guess the state believes I have health issues they with the help me with the help of this one hospital pushing for it (I feel they thought my husband another story would sue them, heehhee) and got me long term care now....wow! I am scared they know something I dont? I have no idea....just my mind blowing ideas around.
Which is or isn't a blessing I guess.....but don't ask me you dont' want me to write more do you?
Well I am just an old lady...and I guess I should of party like no tomorrow....because now I can't....way too bad! I would today if I could.
So your young....and you don't give up...you keep looking for those answers sweetie...because you are young....
I read there are a lot of simtoms like ALS....so right now my first Nuro said Severe Sensory Polyneuropathy....and the so call second one from the Barrows Hospital MDA clinic...whatever.....I am worse...so what I believe in Jesus...so I wait....
I try several things and I had bad reactions too them...my fingers are deforming from the Arthists I have everywhere...my ankle deform from what ever, and I have drop foot also ....so what right? They only did about a billion maybe a million lets say MRI's...I feel like I might glow now...no just kidding! But maybe? no kidding.

Well....there it is...my little nut shell....yes I came here for support and maybe answers...I don't know really not yet told ALS....I don't really want it either....you maybe keep it ...I'll hve my tea with my cookies...and hope I never get told I have ALS...so what I look on the internet you can hate me...but one thing to remember are you sure I don't have ALS?
I feel like hell...so good nite and hope you seak and find what you need little one...the rest sorry you are living with the "real" thing ALS.
What is it anyway? I look at it on line today...what is ALS really? I woke up today and my feet didn't work...my legs were so sore and felt like a billion pounds...
yet I have sensory polyneuropathy...no cure either...but won't kill me I hope.
well good night thank you for letting me shoot the brease with ya...and little one...you go and serach...ok...
buslady