Questions from someone awaiting DX

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Moderator emeritus
Sep 17, 2006
Learn about ALS
New England
Hello all. I posted a few messages because, well, as my family will tell you I am not one to be shy about sharing my opinion. LOL. But I do have questions for those of you who are coping with ALS. I'm awaiting a DX but we've ruled out just about every other disease so it's looking like...well, you all know. You've been there. So my question is this: back in the early days of your DX did you find that there were some days when you felt weaker than others?

I ask because most of the time I can't do a straight leg lift while lying down, but every once and awhile I can! Same with my hands, which is where I experienced my first symptoms this time last year. Most days I cannot rip up a single sheet of paper, but then once every other week or so will come a time when I take that junk mail and rip it up, envelope and all.

Was it like this for anybody else? Is it because the muscles don't die overnight but this is a process? Thanks in advanced for your input!
You've pretty well answered your own question. No the muscles don't die overnight. It is usually a gradual process and you may notice a change then it will plateau for a while. No one can guess how long it takes and how long it will stay the same. We're all different but similar. If you spend a bit of time doing a search and reading back on some of the postings here you might get some insight into how some of us have progressed. Some on here have had it for up to 14 years. Sounds better than the 2-5 you usually hear but once again we're all different. Glad you found us and feel free to ask what you need. AL.
Same thing here. My neurologist told me to continue doing what I normally do throughout the day . I asked him about exercising and he gave me a resounding no. That is not a good thing but stretching is good . Try to stretch your muscles to keep them limber . Don't over do it though.I got weaker and weaker even though I followed my Docks advise but I don't get cramps as bad as they could be if I didn't stretch. I still have days that I feel stronger in my legs than other days and it has been like that the whole 9 yards . My wife helps me with certain things I can't stretch on my own so if someone can help you for 10 minutes a day it may help in more ways than one .
I wish you the best with this and I hope you give it a try .
Your friend Brentt.
Thanks Al and Brentt. Is is good to have the support. ALmost everyone I know at first feels terrible for me but then they re-think their position and they say "you don't look sick," or, "You seem to be able to do almost everything." I think this happens when I wear them down thinking about my symptoms and wondering what the future holds. that's why I am glad to find this place. I did, Al, go back through past threads but to tell the truth I was looking for, and found, a sense of normalcy. I read messages from people who, like you, focus on their friends and family and hobbies and what not. I needed that at the time. I don't want to make a career out of being a sick person!

So thanks for all you do! And it is good to know some people have a slow-moving version of the disease. How about you, Brentt? When were you DX'd?
So CindyM did you ever get diagnosed?
Yes and no. I have a neuromuscular disease that has the early symptoms of ALS but beyond that they cannot say much else. The clinic says I will not get any better and should prepare myself for getting worse but in their experience there are a half-dozen folks, like me, who get to this stage and nothing much happens. We're hoping I stay this way. THanks for asking! Cindy

As you know, I am also in the process of a diagnosis. I want to make sure I ask all the right questions when I go to the neuro later this week. Others on the boards have suggested I make certain that they do an EMG on the tongue as well. What else do they look for in terms of the appearance of the tongue? Atrophy, I suppose but any other physical attributes of the tongue?

One of the posters above also mentioned that his neuro said he should not exercise. Does anyone know why this is? Does it accelerate the degeneration? I exercise and it is one of the few things that lifts my spirit and I would hate to give it up while I can still do certain things at the gym. Thanks.
gluck vmd they wouldnt do any emg on me at the als clinic.
If you're not showing the signs and symptoms they are looking for they will not do an EMG. It's not a pleasant test and there has to be a reason for them to do it other than a person asking for it or saying that they think they have ALS and want one.
I'm assuming they will do an EMG, considering I have the symptoms of ALS.
Well then they should do the EMG and the NVC tests.

Atrophy of the tongue creates (usually) "teeth marks" on the edges. Also, it quivers and has a "tri groove". The center line is usu not staight. It may veer to one side when stuck out and twitch like crazy...

Request the EMG, as a matter of fact, insist on it.

Yes, I will request it. If the tongue is atrophied, does this mean that the most likely diagnosis is the bulbar type or can the tongue be atrophied even when bulbar symptoms are not prominent?

My neuro, an ALS specialist whom I trust, told me exercise won't hurt unless I do so much that I'm sore the next day. So I have kept on doing the workouts I was doing before, to the extent that I can.

Hi VMD I think the key is to keep up activity level to the extent that it is not fatiguing. There doesn't seem to be much info specific to exercise and ALS, but it is known that PALS can experience "overwork weakness." A person without ALS can exercise to the point of fatigue to gain endurance or strengthen muscle, but the loss of motor neurons diminishes the ability to recruit and build muscle after such an activity. A person without ALS may be tired immediately after exercise, but they usually bounce back after 20 minutes. In ALS, strenuous exercise can lead to fatigue that will remain for the rest of the day, or even the next day ... without building muscle or endurance.

Range of Motion and stretching are the most beneficial. ROM exercises can keep joints from getting stiff and painful. Stretching and ROM exercises can reduce muscle spasms.

So, Pappy is right on - continue to exercise, just not to the point of fatigue.
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