question

[lbeyerl]

Have you ever heard of muscle atrophy being the first sign of als? And not just in one specific place. atrophy in the butt, knees, arms, and back all at once over the period of a month. A little weakness in the arms and shaky hands followed but nothing limiting.

 

[CindyM]

It could be due to a number of reasons. I'd start with your GP and then a local neuro. If they don't have answers, try a neurologist associated with a large teaching hospital. The larger clinics usually see more of the hundred or so conditions that cause atrophy and weakness, thus they are often able to give answers sooner. Often but not always. :-D

But start local. It might be something common and treatable. JMO, and I am not a medical professional. Very few of us are around here. :-D

 

[awieleba]

Hi,

just my 2 cents, That is what happen to me but over a few months. I know have weakness, it is not clinical. do you have twitches? Mine is like all over but most in hands and feet/ankle. I have had every test known to man....emg, biopsy,blood, mri of brain & spine,---all normal and no diagnosed yet.

good luck

 

[lbeyerl]

yes twitches especially at night or when i am stressed. The atrophy is present over my entire body and just came on in the past month. In the hands, arms, knees, and the weakness has just begun.
Does this sound typical of ALS? From what i have read (or i think) doesnt it usually take a while for atrophy to set in and usually only in one limb at a time?

 

[Al]

It certainly doesn't sound typical to me. One month is way fast and many places is not typical and most get weakness first. I'd see a doctor. We don't give a diagnosis here just offer guesses. Some are educated guesses ( wright, Zen ) others are uneducated guesses, ( me and the rest )

AL.

 

[wright]

Could you give us more details:

How did you notice the atrophy?
How much atrophy do you have?
Could you describe your weakness?
Are you still progressing?

As Al said, it isn't typical for ALS to start on such a global scale, unless you were completely unaware of your body prior to any of this happening.

 

[lbeyerl]

Wright,

Thank you for your time.

First off I am only 22 years old, I know how rare it is to contract the illness at such an age but I have heard of several cases.

About a month ago I had a virus of unknown decent. Fevers, chills, and weight loss. The whole boat. Feeling very yucky indeed ;(

I felt great for about a week and then started noticing a different kind of weight loss. I have always lost weight from my bust and stomach first. I lost 7 pounds (which is a lot for me, I am small build). It was first noticable in the shoulder area where the arm meets the chest. Looked very saggy and small. Then I started to notice trenches in my calfs and indentions in my knees. I still did not think much of it until my butt started to sink in. My feet and hands look bonier. I am very in tune with my body as i finally have maintained a stable weight through 4 years of college and recently graduated. I have weighed the same and looked the same for basically 4 years, so a sudden change was quite noticeable.

my muscles in my arms feel weak. Nothing too severe- get tired after blow drying my hair and sometimes become rather shaky. I notice my hands shake a lot more than they used to.
I find my arms the weakest when i have to raise them about my head. I was writing on a board at work the other day and had to stop. I notice it has gotten worse in the past several days. I can still button buttons, type, turn keys, etc. I also have a little trouble with speech. Not a slur more of sometimes cant find the word im looking for and have to pause.

I have visted my GP who scheduled me for an MRI. Any thoughts?

I tend to always assume the worst, but my doctors concern really threw me for a loop.

Thank you so muc

 

[lbeyerl]

by the way had a blood tests :CBC, metabolic profile, and tests for autoimmune diseases...all normal.

 

[wright]

Hello again

The quick onset of your condition and how it affected you on a global scale, certainly isn't typical of ALS at all. It certainly could be viral in nature, given your infection just a week prior to your symptoms . . . or . . . a post-viral autoimmune syndrome.

Just because your bloodwork came back clean, doesn't mean you don't have some type of autoantibody circulating that the tests simply didn't detect (the tests for the autoantibodies are specific).

I'm not sure why they're going to do an MRI, because if you have all of your limbs affected, along with your torso, the chances that it's any type of disc issue or lesions is next to nothing. The MRI could also be used to check for MS, but it isn't MS because it happened too suddenly and MS doesn't present with atrophy like that (atrophy with MS is due to disuse and takes a very long time to become evident).

If I had to venture a guess: my money is on an autoimmune problem that is eating your nerves and you will more than likely just have to wait and heal. They could potentially treat you with IVIg or plasmapheresis or potentially with steroids. I would ask for an EMG and make sure it's done at least a month after you noticed your symptoms . . . and make sure it's done by a neuro who is experienced.

Are you still progressing? Could you give us an idea of how much atrophy you have (have you taken measurements)? Do you have any sensory symptoms?

Just to make sure you know: I am purely speculating about your condition, given what you have told us. Your symptoms are very similar to mine, so I would be interested to see what they find. Put your trust in your neuro and let us know what he/she says. Take care and I wish you the best.

 

[lbeyerl]

Wright-

Progression is a hard one to say. I feel the same today that I did yesterday, but my hands get a little shakier everyday. I can still lift things, just have tired shaky arms afterwards. The tiredness feels like it does right after you a get a flu shot in your arm..stiff and heavy.

I know for a fact I have lost about 2 inches off of my waist as my old pants no longer fit. I am usually a size for and have had to where old 2's and 0's. I have no measured muscles but will start to do that now.

Is ALS becoming more common among the young population? I will mention it to my doctor but do you think he would even suspect ALS?

As for sensory symptoms I havent had any. The only thing that is strange is I will wake up in the middle of the night to my arms falling asleep or feeling tingly/cold/tight. It has happened about 5 nights.

 

[lbeyerl]

You mentioned your symptoms are similar, have you received any type of diagnosis yet?

 

[lbeyerl]

I always forget things when i Post! I wanted to mention that I get a lot of "achy" feelings in my arms and legs, and ESPECIALLY my BACK. That is why I figured it might not be ALS I didn't think aching/pain occured.

 

[lbeyerl]

Just an update ..still looking for input..

My face is showing signs of atrophy. Two indentions by my temple, and cheeks. I compared it to pictures taken 3 months ago and the difference is striking.

After I exercise or when I am going to sleep muscle in my legs "jump" or twitch" non stop. Quick jerky movements. Sometimes a finger or a foot will jump for no reason. It is happening in my calfs, thighs, butt, and even in my arms once or twice.

I am not sure how to tell if i have clinical weakness but typing tires my arms, walking tires my legs after a while. My limbs feel very heavy.

The atrophy (or supposed atrophy) is present in my biceps, deep indentions on the insides of my elbows. My ankles have deep indetions now too and the bottoms of my feet and hands hurt and the bones are easier to feel. My knees have indections, my thighs have gotten smaller, and my butt is flattening. I have two indentions on either side of my stomach as well and my stomach has gone completely flat. Where the arm meets the chest the skin looks saggy and my armpits look very deep. My spine is visible too.

All of this has pretty much happened in a month / month and a half it seems.

I am so confused about what i read about als atrophy. Am i correct in saying it happens after PROFOUND weakness is noticed?

Could this be als since I am only 22? I havent read of anyone having this kind of visible shirnkage/atrophy all over the body as a first sign of als.

I am very scared, and so greatful for this forum to comfort me.

Has anyone had a similar occurence?

My neuro appointment is next thursday I am hoping I wont be completely wasted away by then..

I wish i had the courage that you all have. I am so nervous and breaking down so many times a day.

 

[awieleba]

Hi

I can relate. My body changed alot also. It was hard to tell as I was preg & had a colon infection that caused mr to loose wieght after baby, So I lost all the baby wieght and then this strange stuff started with the twitching and thigh tiredness. My body was normal (size4), then I lost almost 10 pounds in like a week and half! I then noticed that my thigh's (more of thr right) was indented in and my calves had shrank super fast--it left strectch marks! Then I saw in feet and hands, then lo' and behold my fanny was gone! I am like you, I always lose and gain in my bust and tummy, so this was wierd. I have NEVER had a flat behind. My hands hurt sometimes when working in kitchen or pushing the stroller. I think it is because the muscle is gone. My feet hurt if i wear high heels, and I have always worn heels! My feet ache bad now, so I only wear sometimes--this is a good season for me with flats being back in style.

My face has gotten thinner also. My twitching/cramp feeling was in my jaw, and my chin is alot more pointy then before and my eyes twiched bad and they seem thinner. * I brought photos to my neuro and she just said, you look tired in some of them and rested in others! My family says it is age...ok

just a warning...I was nervous about the wieght loss so I went on a mission to see if I could gain it back. WELL, I did. 14 pound over the summer. Guess what, It did not appear back like it normally would/ It only came back in my middle. Butt still gone and legs still small. So now I have a pot belly.....sad. And I have exercise intolerance, so this is a mess. Again, good thing pheasent tops are in style, these trends suit my new body---flat shoes with roomy tops!

I wish luck,

april


So, I get alot of limb jerking when laying in bed, it has gotten better but the twitching is still there.

 

[lbeyerl]

Thought I would post this to honor all the good doctors out there...

I lost a few more pounds this week and am now down to 115 (from 125 two months ago no diet changes).

My doctors nurse called today and said this "Your MRI is clean. At this point the doctor says there is nothing else she can do for you you."

Wow. Thank you. Good thing I already made my OWN appointment with a neuro.

My back aches so bad it spread down to my upper arm muscle. My face is sunken in in the temples and the mouth cheek SO bad now. My mom is flying in tomorrow night to be with me.

Any ideas?

The twitching is worse and ALL over..not just one limb. Even in my stomach, lips and back. What is this?

I am hoping I will get a good new doctor, I can't believe how quickly I was dismissed. Hope you are all doing well out there, God bless.