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vmd

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I know that there are a few of us who are awaiting a diagnosis (annmarie, Jamie, ltr, Cindy, etc.). I would like to ask this group if they have experienced weakness and how was the weakness noticed. Is it subjective weakness or measured weakness? Has it progressed to other parts of the body? Have you been able to regain some of the strength? Have you noticed cramping before weakness? Have you noticed a relationship between weakness in the areas that fasciculate? Do you experience muscular fatigue along with weakness?

Thanks for the input. I am having a pretty hard time with a variety of symptoms that seem to be increasing, even though, as you know, I supposedly had a clean emg.
 

vmd

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Like you, I wonder the same thing about the atrophy process. Since I was not concerned about atrophy before I had the als concerns, I may not have noticed how my hands and arms looked before my concerns. In this sense, I can only guess about whether I have atrophied or not.

At some neurological level, fasciculations, atrophy and weakness must be related. The specifics of how these 3 processes are related is the problem. One would think that weakness would occur after atrophy and since fasciculations may signal damage, that these would precede atrophy. Of course, clinically, this may not be the case.
 

ltr

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VMD - yes, I do experience weakness. Unfortunately, I am not sure if it is a perceived weakness or if I am truly weaker than I used to be. I am able to pass the neuro test by squeezing the docs hand, pushing my leg against his hand....you know the routine. But, does that mean I am doing it as well as I could have last year? That I don't know. I think the neuros call it clinical weakness when you can't push at all or get up from a squat. Then they know it is weakness. Go figure.

I notice my weakness because I get the feeling I am a rubber band, like I can't walk a step. Most recently my hands haven't been working well and get spasticity (some of my fingers are straight and are difficult to bend, I have to "snap" them down). It gives me a feeling of utter exhaustion, I have to sit straight to get a good breath.

It has progressed to other parts of the body. I started with weakness only in my legs, then my ribs and back (I am very thin, but the muscle and skin on my ribs and back has "fallen"). Sometimes this weakness will last for a couple of weeks and then I feel like the weakness that overcame me is gone, but I am not strong like I was.

I think my cramping started at the same time as my weakness, but now I get periodic muscle pains all over, even ribs. My back has been excruciating at times and it is definitely muscle cramping, even from sitting up too long. Once I couldn't stand up straight for 2 weeks from a back spasm. The docs thought nothing of it.

The fasciculation thing is a killer to answer. If I use my legs, let's say for a walk, I will get unrelenting fasciculations, but not just in my legs. No matter what part of my body that I exercise they will be all over, face, ribs, stomach, legs, bottom of feet, everywhere. The neuro who did my biopsy today told me that he started fasciculations the first time he "tried" to surf and they haven't gone away, and they are everywhere.

And yes, I experience muscular fatigue with the weakness. Folding a towel in front of me causes my arm muscles to burn in muscular pain, like I just did 10 reps with 100 pound weights, and they are also weak.

I hope these answers help you to realize that we are all pretty much sailing in the same boat! I also had a clean EMG, so time is all we have to help us. I hope you are doing okay. Leslie
 

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Hi Annmarie - the neuro who did my biopsy was yet a different one from the other 3 I met at this clinic. This really is a great place and I like having different neuros with different thoughts. Yes, the handsome young guy I had today probing around my leg (most fun I've had in awhile! Sad isn't it?!) has had fasciculations for awhile. He said that he "tried" to surf and when he sat back on the beach he said what's wrong with my calves. He now gets fascics all over and sounded like he has gone through some very worried times himself. Anyway, what an experience, it really wasn't much fun! Leslie
 

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ltr said:
VMD - yes, I do experience weakness. Unfortunately, I am not sure if it is a perceived weakness or if I am truly weaker than I used to be. I am able to pass the neuro test by squeezing the docs hand, pushing my leg against his hand....you know the routine. But, does that mean I am doing it as well as I could have last year? That I don't know. I think the neuros call it clinical weakness when you can't push at all or get up from a squat. Then they know it is weakness. Go figure.

I notice my weakness because I get the feeling I am a rubber band, like I can't walk a step. Most recently my hands haven't been working well and get spasticity (some of my fingers are straight and are difficult to bend, I have to "snap" them down). It gives me a feeling of utter exhaustion, I have to sit straight to get a good breath.

It has progressed to other parts of the body. I started with weakness only in my legs, then my ribs and back (I am very thin, but the muscle and skin on my ribs and back has "fallen"). Sometimes this weakness will last for a couple of weeks and then I feel like the weakness that overcame me is gone, but I am not strong like I was.

I think my cramping started at the same time as my weakness, but now I get periodic muscle pains all over, even ribs. My back has been excruciating at times and it is definitely muscle cramping, even from sitting up too long. Once I couldn't stand up straight for 2 weeks from a back spasm. The docs thought nothing of it.

The fasciculation thing is a killer to answer. If I use my legs, let's say for a walk, I will get unrelenting fasciculations, but not just in my legs. No matter what part of my body that I exercise they will be all over, face, ribs, stomach, legs, bottom of feet, everywhere. The neuro who did my biopsy today told me that he started fasciculations the first time he "tried" to surf and they haven't gone away, and they are everywhere.

And yes, I experience muscular fatigue with the weakness. Folding a towel in front of me causes my arm muscles to burn in muscular pain, like I just did 10 reps with 100 pound weights, and they are also weak.

I hope these answers help you to realize that we are all pretty much sailing in the same boat! I also had a clean EMG, so time is all we have to help us. I hope you are doing okay. Leslie

Hi leslie,
I am kinda freaking a little bit when you said that thing about your fingers and not bending that well, i have this same problem. I never really thought it was als related until recently. Mine almost feels like a joint thing. I can open my hand with all my fingers but my pinky on my left hand seems harder to left, or kinda like you said, a rubber band. I can left it but it feels as though i am moving it agianst gravity. And it feels like my joint in that finger is going to dislocate. Does this sound like yours or als related. I go for the emg tomorrow.
Ashley
 

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Ashley - don't get upset, I haven't been diagnosed with anything yet But the spasticity can be indicative of quite a few things. Yes, als is one of them, but there is also a lot of myopathies, Isaac's syndrome (which is one they are thinking for me) and simple things like magnesium, some metabolic disorders, etc. I have also noticed that lifting that you talk about. Sometimes when washing my hair my arm feels kind of unattached and weak. My neuro had me straighten and curl my fingers ten times quickly on exam to see the spasticity. Not sure what that told him. Like Jamie said, write down questions so that you won't forget anything when you go to your EMG Tuesday. Let us know! Leslie
 

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I can relate to the "rubber-band" feeling, since I also have this symptom in the right arm and legs. The right arm, which is the first place I noticed weakness, will fatigue quicker than other areas and will also quiver if I try to maintain a certain amount of resistance against it. In addition, the muscles burn as do yours when I engage in repetitive activity with the right arm.

The irony is that I must have regained some strength in the right arm because the weight that I could not lift about two months ago, I can lift now. Yet, the arm still feels "heavier" than the other arm, and at the same time weaker. The right arm also cramps faster.

What do you make of this? About 2 months ago I was able to lift 80 or 90 pounds free weights (I don't exactly remember how much), with ten repetitions on an isolated bench press machine (not bad for a 55 year-old guy who only weighs 150 pounds, eh?). I hope you are duly impressed (especially the ladies on these boards!). Then two weeks later I could not lift the same weight more than 4 or 5 times.

Within the last week, I am now able to lift 90 pounds and even 100 pounds ten times with the right arm on the same machine!? The right arm is still weaker than the left, however, as I can do more repetitions with the left arm than the right arm. What is going on?
 

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VMD - first, I will tell you completely impressed I am with your work out abilities! You must be ripped!:) Anyway, I can relate to everything you are saying. It definitely is NOT a good sign when you can't lift the same weight and repetitions that you were previously capable of lifting. Then the docs think, because you are ripped :) , that you are a strong person, so why are you upset, right? Totally frustrating. And, my weakness goes away at times too. I think there are a lot of disorders that cause these symptoms, one of them being Isaac's, another is Lyme (which is really hard to diagnose, so just because you've had a test doesn't mean anything). For me, I really hope this muscle biopsy will tell something. Maybe if you keep a journal you will be able to pin point a clue as to what is different when your weak as compared to when you are normal. Give it a try! Leslie
 

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Leslie:

Thank you for being impressed!

Yes, keeping a journal is a good idea. In my case, what is puzzling is that I am now able to lift the same amount of weight (and more) that I could not lift a few weeks ago with my right arm. This means the right arm has re-acquired some strength. Yet, the right arm is still weaker than the left. Also, I can't say that I have noticed profound profound atrophy on my right arm. It seems to be the same size or slightly larger than the left (which was always the case, since I am a right-handed person).

I hope your biopsy provides some answers.
 

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Hi VMD- At one point I was getting Physical therapy because they thought the cramping in my hands could be due to a pinched nerve. The Pt noticed I got weaker with excercise, and now I have lost muscle in both hands. But I have clean emg's so we are waiting for something to change.

Another doc noticed I have muscle fascs. At first they were too small to feel but now they are really noticible. And this time last year I lost the use of both legs for a few days but nothing since then.

But I am strong in many ways. Can't open an envelope but I can lift my 19lb grandaughter. My hands and feet are either numb or cramping all the time and a phone gets heavy after a few minutes but I still work and drive and even work the garden if I am willing to lay around on the sofa for the next day. So I am very thankful that I am not worse and glad for what abilities I still have for as long as I may have them. Cindy
 

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CindyM said:
Hi VMD- At one point I was getting Physical therapy because they thought the cramping in my hands could be due to a pinched nerve. The Pt noticed I got weaker with excercise, and now I have lost muscle in both hands. But I have clean emg's so we are waiting for something to change.

Another doc noticed I have muscle fascs. At first they were too small to feel but now they are really noticible. And this time last year I lost the use of both legs for a few days but nothing since then.

But I am strong in many ways. Can't open an envelope but I can lift my 19lb grandaughter. My hands and feet are either numb or cramping all the time and a phone gets heavy after a few minutes but I still work and drive and even work the garden if I am willing to lay around on the sofa for the next day. So I am very thankful that I am not worse and glad for what abilities I still have for as long as I may have them. Cindy


Hi cindy,
I was reading your post and wanted to ask a question since you are seeking a diagnose. I thought that ALS never comes and goes? It just gets worst right? So how could you lose both of your legs for only a few days and then it comes back? My doctor also told me that numbness was not a symptom of als? He told me that because i told him that i had some numbness. And you had more then one clean emg? That should make you feel better and maybe lean towards something else besides als right? Thanks
Ashley
 

vmd

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Cindy:

As with you, I also get weaker with exercise or my muscles cramp. In addition, like you, objects become heavier and muscles burn after a short period of time holding the object. I know you are in a plateau with respect to some of your symtpoms. This is not common in ALS, is it? My GP told me that ALS is relentless.

Also, my right arm strength seems to be going down again after what I believed to be a regaining of strength in that arm. It is quite confusing!
 

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You are all correct, of course. That's why my doctors are stumped. The clinic says I am a rarety among folks with neuro-muscular diseases, which in and of themselves are rare. Aside from regaining the use of my legs after that brief incidence, all the other symptoms remain stable so they say clearly something is wrong but unless and until I get worse they can't say what is going on.

So here's what I decided to do. I decided to forget about getting better. (In fact, the ALS clinic says I should prepare myself for getting worse.) BUT, I also decided that every day that I don't have a definite DX is a good day. I say this because we have run out of options for what it could be, meaning if I get worse it will be one of the MND's, I suppose.

At this stage, my symptoms are easy to get used to. For example, if I drive a lot my right leg cramps until I can't use the brake or gas petals. The solution is to avoid lots of driving. If I get overtired, I can't climb stairs. So I get plenty of rest and try not to run up and down to our second floor more than a couple of times a day. Buttons and zippers are clumsy and difficult, so I changed my wardrobe. All easy stuff.

I grieved the necessity of these changes at first, then I met all of you. From you guys I've learned there are more important things to focus on. Now my family and friends come first. So thanks to all of you for this forum! Cindy
 

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weakness

Hi, i thought i would share my weakness experiences.... clinically i am between a 3 and 4 which is not bad...... I hate being on the phone because i get cramps in my hands and they get stiff and hard to relax. In life it is harder for me to hold my arms up to put up a shower curtain than it is to lift a small child and hold them for a minute. Because of wasting muscle in my back i can still swim but if i play a game where i have to bend over repeated to pick up a ball i can barely move the next day. Yardwork is the worst on my body and when i do it i become weak and feel like i have weights attached to my whole body and have to rest for days. Yes it does feel like you have those excersize rubber bands attached to your body, their is resistance (tightening) when you move..... Just dont over do it because if you do you will get spasms and stiffness.... My neck and back were so stiff from moving student desks and chairs that i could barely turn my head the next day. This is confusing for people in your life who do not know what ALS can do..... They see me swimming but they dont see me rest my whole body for hours on end so i can do the normal things that anyone my age can do.....
 

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I know what you mean When people see me they say Oh you look great Like they are expecting to see something terrible, But with ALS most of us look healthy. I always kid and say Have you seen me naked . Everyday tasks are monumental Picking up a tooth brush is like lifting a 10 pound weight Pulling the covers on me is almost impossible,putting on makeup takes forever.And cooking thats never going to happen. My life has change in a way I never could have imagined in a lifetime. But I am still here.and for now I not going anywher. Get the Rhyme LOL Your got to laugh or you go crasy Take care and God Bless Us All Pat
 
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