New symptoms

[zachnnicksmom]

Ya'll are so nice. No, I'm not a nurse...I wouldn't survive a day as a nurse! I do have one other question I can't seem to figure out from my internet "studies"...How do you know if you have muscle atrophy? Do you automatically have weakness or inability to use the limb if there is atrophy present? Does it just look smaller or sunken in with no other symptoms or is it painful, etc. My left calf (not in the back of it where I hurt it), but kind of nearer to the knee and to the inside a bit looks a little more sunken in than the right one does at that same spot, but my husband looked at it and said it just looks like a slight difference in one leg being more dominant than the other. His almost looks the same way...I can't remember if it has always been this way or if it is new. But I can't get a clear picture of what everyone means by atrophy and wasting and how quickly does this occur and how rapidly does it progress? Sorry this is so long...

 

[zachnnicksmom]

Oops..forgot to mention I just had a whole host of blood work done 3 months ago b/c I've had a pain in my ribs for almost 5 years now that won't go away. They were looking for anything to explain it ,and bloodwork came back with my Lipase levels slightly elevated so they tested it 2 more times and both times everything came back fine. They did a CT scan to check the pancreas and it too came back normal.

 

[BethU]

Hi ... I am not too swift on the details of atrophy so far, as I've just got a little, so others can probably tell you more. But I do understand that atrophy comes after the weakness and twitching.

I have some atrophy on my palms (I know because the neuro pointed it out to me), and it looks like there are small gouges in the middle of my hand. There is deeper atrophy where my thumb joins my hand, and the skin is deeply wrinkled there, as the "flesh" is gone. The gouges seem to be about 1/4 inch deep.

Atrophy may look different in other parts of the body, but if you are not experiencing weakness, then you should not have to worry. Weakness is the hallmark of ALS. Twitches can be a million other things.

Take care.

 

[awieleba]

Hey

it will be hard to really tell if you have a difference in you legs, because you probable never looked soo intently before and alot of people have difference's. Your doctor should be able to tell. My rhuemy said for sure that I had atrophy of my thumb and index finger, yet my als doc, was not concered by it all? I have stretch marks on the back of my calves from the bulk being lost. MY thigh has a indent from muscle loss. MY feet and hands have lost bulk, I mean they are boney and it is just so obvious, The first neuro pointed out that i had atrophy on my palm. I have had clean emg and essentially normal muscle biopsey with a clear of als. so try to relax. My first symptom was while pregnant in my left calf like you. It felt tight and painfull and went to my ob becuz I though it could be a clot or something (thank you to my sister who works for a knee surgeoun to tell me that a pregnant lady came in with a pain in calf and it turned out to be a clot and she died! ok, who tells a pregant women with calf pain that?) anyway, I though it was varicose veins. i have the cramp-going-to-happen feeling too. OH, and believe it or not, I have a pain in my rib area. Before I got pregant I had a few ultrasounds on my abdomen because I had a constant feeling of tightness/bloating in my stomach. I have had it all it seems.

Hang in there and go see a neuro. I think you will be fine. I share my story to just reassure. I am alittle nervous about this but it does not rule my life and I hope that I find out what it is and that it is not als, so that I can post it and calm other people who had all that I had..........

 

[zachnnicksmom]

Thanks so much for your reply, and for attemptimg to ease my mind some...I definitely need it right here befor bedtime! As far as weakness goes...how would you describe it? Heaviness or stiffness or almost complete inability to operate the limb? Ihear "weakness" being talked about with regard to ALS symptoms and just wonder how "weak" is weak?

 

[zachnnicksmom]

So Awieleba, what have the docs told you so far if you've been cleared of ALS (thank God for you)? And thanks for your reply. People are being so great to share their stories with me.

 

[zachnnicksmom]

I have barely twitched all day and now that I am on here talking about ALS I am twitching like crazy! So scarey.:shock:

 

[jennibf]

What I love about people asking questions is that I learn something every time it seems!

 

[zachnnicksmom]

I know, it's good and bad sometimes! What symptoms brought YOU to these posts?

 

[zachnnicksmom]

oops, sorry..the question above was meant for jennibf...didn't make that clear...I'm a newbie!

 

[jennibf]

About a year ago I started having hip pain, it worsens as the day goes on but I kept dismissing it because I had gained a little weight (although I am not in the overweight category). Then in August I tripped and hurt my toe badly so I went to an ortho who discovered I had clonus (hyper reflexes). He felt that I was clumsy and that I have something going on-upper motor so he sent me for x-rays, MRIs and most recently a full body bone scan. The only thing that showed was some degeneration of discs. He did say my blood work showed a tad low in protein?

About two months ago my neck started killing me, again-worse as the day goes on. It is stiff and painful to move around but okay when perfectly still, just stiff. I thought it was the way I slept. Not long after that the muscle twitches started. Now I have trouble walking and the more I do the worse it is.

I would prefer almost any diagnosis to ALS. I hope they find a disc issue on Wednesday that is operable. I know that sounds awful but 1. something is causing this, 2. it's getting worse and 3. that would make it better.

I also have had cardiomyopathy and eye muscle issues and muscular dystrophy is in my family (a nephew and two uncles) so we shall see.

I can definitely see how having had a dad with it would make you really worry but hang in there with the rest of us and we'll get it all sorted and hopefully it will be benign. I love that word---benign...or you could go back and read through some of Zaphoon's posts, he has helped us see that it could just be a pinched nerve

jennifer

 

[BethU]

Hi, Zackknicksmom (did I spell it right?) ... I experience weakness like this: I don't "feel" weak at all. I feel perfectly normal, the way I've always felt.

But, suddenly one day, I tried to turn a key in a lock, and found I couldn't turn it. I wasn't strong enough! The ignition key is the hardest, as you don't have room to maneuver. Other locks I can use arm strength or leverage to do it, or turn it with two hands. But sometimes I have to get my husband to turn a key for me.

I'm still driving, and I'll go to take a parking ticket from the machine at the entrance of a parking lot, and I can't pull it out of the machine. It takes two hands, and sometimes even that's not enough. Now I carry a pliers in the car just for those stupid little tickets.

One day, I filled the kettle with water as always, and found I couldn't lift it. So now, I only fill it half-way, as I can still lift that.

I can't tear a single sheet of paper in half any more. If I want to tear up a check, I have to use sissors.

I do not have much disability yet (except in my speech), so I am still functioning by making adjustments and finding odd solutions, and getting my husband to do things I'm not strong enough to do any more.

Hope this helps a little.

 

[zachnnicksmom]

I see. So, if I had "weakness" in my calf, it's not the same as I described above as an actual PAIN that happens only when I push off on my toes. And that PAIN wouldn't have happened suddenly when stepping up on a step, and wouldn't have gotten any better right? I would have trouble walking on it, if I even COULD walk on it at all? Am I understanding this correctly? Also..I know a lot of people on here have been saying nerves can wreak havok on all this twitching, etc. but isn't it correct that with ALS the twitching USUALLY comes AFTER you experience weakness in ONE AREA like your hand or foot, etc. And the twitching COMES FROM the fact that the muscle is deteriorating? And you twitch in that ONE area you're having problems with, not all over your whole body? I not only twtch in this one calf, I twitch everywhere...face, BOTH hands, BOTH legs, BOTH feet... I have the tiny little feeling that I'm about to get a muscle cramp (that never happens) in my arms, legs AND arches of my feet...I am an equal opportunity twitcher! ALL of this has happened within the last 4 weeks so this hasn't been going on long at all really. It ALL seems really sudden. I AM A WORRY FREAK...I mean REALLY BAD to the point of MAKING myself sick! I still walk 30 min. everyday with no problem...my upper thighs go crazy twitching after my walk but they have always done that for as far back as I can remember! Thank you so much for taking the time to help me understand this better and maybe ease my worried mind a bit.

 

[wright]

None of what you describe . . . especially in the span of a few weeks . . . is indicative of ALS at all. Relax and go see a neuro for peace of mind, because if you don't, I can already tell that you will obsess about this.

 

[zachnnicksmom]

I LOVE YOU WRIGHT! This is exactly what I was hoping to hear! You are right..I was extrememly worried and upset and just needed someone who has been through this or who knows something about it to reassure me that I'm just being obsessive and crazy! Thank you- thank you- thank you! I appreciate SO MUCH you're taking the time to respond!