Has anyone had a similar experience?

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New member
Dec 14, 2021
Learn about ALS
Hello all. I probably have a somewhat common story with a few underlying differences. I would just like to get a handle and see if anyone has experienced similar symptoms.. As I've learned they seem cut and dry when you're looking around on the internet but apparently that is not the case, so any input will be welcome.

First of all. I HAVE been diagnosed with Myotonic Dystrophy (type II). While this is a much less terrifying diagnoses compared to ALS it is still taking a bit to get used to. And to make matters worse it is so rare that there is VERY little information about it online. This disease is basically characterized by progressing muscle weakness and myotonia (inability to relax muscles normally).
While growing up, I knew there was a 50 percent chance I had this (as it's purely genetic and my mom has it), but I didn't start experiencing symptoms until a couple years ago. Typically characterized by the myotonia (especially when shaking hands) but weakness has been a little more prevalent here recently. I figured I had it but I wanted to see a neurologist to be sure.
Anyhow. I did the EMG, the MRI, the genetic screen to identify the gene.. etc.. So I've been through a relatively thorough panel.

Anyhow. In August I started with a whole slew of brand new symptoms.
The first was twitching/tremors/"convulsions" in the left hand, mainly the pointer and middle finger.
I didn't think much of this, but (of course) I googled it and shortly thereafter I started with additional symptoms which I discovered during that initial search.

1. Twitching. My right calf was first. Especially noticeable at night, but really doesn't ever stop now. That has spread to most of my body. With especially violent twitches in the muscles on either side of my left elbow.

2. Seemingly poor fine motor coordination. I can type on a keyboard pretty normally. a phone sometimes presents challenges as I feel like I can't guide my hand like I used to. I am constantly accidentally clicking things when I'm scrolling. etc. I AM able to do everything I've ever been able to do thus far. One time, a year ago or so, I was camping and it was like high 20's outside. I'm attributing this to the cold and the MD (but it's never happened before or since) but my hands just became SUPER weak. Like I couldn't do/undo the button on my pants. Or really do much of anything. It returned to normal later that night.

3. Noticed a FEELING of weakness in my right leg and right arm. I have read a few times where there aren't "feelings" involved in ALS it's just on or off.. is that accurate? I'm able to walk and get up stairs and lift the weights I've always lifted. It is worth noting that the neurologist did mention weakness in the right hip flexor (I believe) when we did all that. That was the only one she said I was deficient in at the time. Like I said, I can't find much about myotonic dystrophy online so I don't know if the disease can present as isolated weakness or just generalized, even "wasting."

4. Fatigue. I seem to get muscle fatigue much quicker. Especially noticeable when holding my son. My left arm gets tired almost immediately whereas it didn't use to do that. If I'm laying in bed at night and on my phone, my arms will get tired pretty quickly too.

5. I am calling these cramps, but I'm not really sure. They are more like pre-cramps I think. In my hand and the arch of my foot. I don't get them especially often but they are definitely new. Once in awhile it feels like the muscles are tightening up and it feels like what you feel before you get a charlie horse. Just uncomfortable tightness. It goes away, usually quickly. I've had two episodes where the top of my hand, near my wrist, has just, all of a sudden gotten extremely sore. I don't know what it is. It feels like someone hit a very specific spot with a brick or something. It makes bending the fingers pretty painful. That happened once on each hand. It has gone away, in both case, in like 12 hours or less.

So these things all developed since like August. With the feeling of weakness being the most recent. And that's been the past 2 weeks or so.
My wife keeps telling me that it would be impossible to have MD and ALS. But I don't think it's impossible, just unlikely, to have 2 rare neurological disorders.

I've expressed all of these symptoms to my neurologist and she didn't seem hesitant in the least to say that they were due to the myotonic dystophy. I have my doubts because of the speed with which these things developed. And the fact that I've never had any of these symptoms before in my life (I think I've had the elbow twitching a few times in the past). My mom hasn't had the twitching or cramps (that I know of). She definitely has weakness as she can barely walk or get up now but she is mid 70's so that's to be expected.

With all that said. I have a couple of questions...
1. Does this sound like typical early symptoms or like the progression that anyone else has experienced?
2. My neurologist has NOT seen my EMG as it was done at another neurologist more local. The neurologist there told me immediately that something was abnormal (which is what we expected because of the MD), but I have no idea if there are any determining results that could help point to or distinguish ALS from MD? That neurologist was a jerk and he was all excited about having something "abnormal" to show his student that I didn't go back for the "follow up" and figured I'd just continue care with this more "experienced" neurologist. So all I know about the EMG is that it was definitely not normal.

Regardless of whether or not I do have ALS I greatly appreciate this community and your spirit! I can't imagine the phycological and emotional pain that is involved with this terrible disease. Jesus loves all of us and this world is not our home.
Your case is very complex, and I really don't feel anyone here would be wise to attempt any opinion especially with no EMG to look at.
We have no doctors here, but I can tell you that PALS don't have a feeling of weakness, so if that is your main guide (and twitching means nothing), then you may be pushing for an incredibly unlikely situation as your wife says - 2 incredibly rare neurological diseases at the same time?
send the emg report to your regular neurologist. I would expect they will be able to tell you if there is any cause for concern as Md and ALS look very different. It is also possible that they will wish to do their own which is common so do not freak out if so. Every person is different but the only other time I remember having someone with an MD here worried about changing symptoms it turned out the symptoms were in fact MD and their doctor ruled out ALS
I appreciate the replies! I know the only real path forward is to discuss with the neurologist and eliminate (or otherwise) ALS. I wonder if the original neurologist would mention ALS if the EMG suggested that. This is a relatively large city and I assume there have been at least a couple cases go through his office.

It's "encouraging" that (at least 1) other MD patients have had similar experiences. I've gotten similar confirmations from a Facebook MD group I'm in as well. The changes still seems too drastic to me. which causes the worry. but it very well could be a normal progression.

Can someone explain the weakness? is the weakness a function of perhaps other muscle groups dying around the main group you're utilizing? or is there weakness involved in a still "reachable" muscle if it has some (but not complete) neuron damage? To me... the weakness kind of manifests in a feeling I compare to a limb that you know is about to fall asleep. like if you don't move and you let it fall asleep to avoid the uncomfortable pins and needles. it's asleep. you don't really feel anything but you can sense it's asleep. it feels like that to me. like some muscles are on the verge of falling asleep.
The feeling you describe is not the primary sign of weakness in ALS, which is a disease of failures. in MD, the muscles are themselves weak. In ALS, the nerves that control the muscles die. It is not the same and as Nikki says, the EMG findings are very different.

Any neurologist that did an EMG or read the examiner's report and found any evidence of motor neuron disease would say so. You get sued if not. But for continuity of care, I would make sure neuro #2 gets a copy.

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To understand the weakness please read this post through carefully
I appreciate the thread link and I had read it (very well put together btw). I re-read and I'm certainly not "fighting" here just genuinely curious about the weakness associated with ALS.

LGELB is spot on saying (summarizing) that MD causes muscle weakness and ALS causes muscle failure, however
EVERY single website discussing ALS lists "progressive weakness" as a symptom.

And from one of your posts in another thread you said.. "PALS don't feel this weakness nor tiredness, they are totally surprised their body refuses to do what it should."

So.. Is this just a problem of translation? To me, "weakness" is the antithesis of a purely binary (on/off) system. It is, by (my) definition, a degraded point between working properly and not working at all.
So I guess the question is, is there a period of time before muscle control is completely lost where weakness (the sensation of feeling like you should have more force but can't generate it) can be perceived? Or is weakness, in this context, just a way of saying absolutely zero muscle control in $x spot?

To me.. It's like "weakness" in this case is the WebMDs of the world pointing at a car and saying "that car doesn't go very fast" when they know very well that it doesn't even have an engine and doesn't "go" at any speed. Sure, both statements are accurate.. but saying it doesn't go very fast is definitely misleading.

I mean. If it's literally a matter of "on until off" it would probably be very helpful in dissuading worry warts from selfishly bothering suffering people if they could tweak that language a bit.
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Progressive weakness in that individual muscles fail. First one then another etc. i did not wake up one day with an inability to walk- my ankle no longer held me up when I stepped sideways because that muscle did not work. Everything else worked well. The emg doctor was able to pinpoint and confirm this on testing. There were signs of impending failure in surrounding muscles and subsequently I could not walk on toes, then heels. And so on. Many activities use multiple muscles so some things become difficult first because others compensate but the individual functions disappear in the on/ off manner.
did you get your emg report sent to your neuro? There is a legal requirement that you have prompt access to test results online so there is really no reason you can’t resolve this with the doctor rather than consulting Mr Google and posting here
The web sites that stipulate "progressive [clinical] weakness" are talking about inability to do X on day 1, inability to do Y on day 30, etc. Not feelings. I think the bracketed term is key and not always understood as part of the diagnostic process.

Your mind is completely able to make opening a magazine feel "hard" and your hands to feel "weak." But it cannot make you physically unable to flip a page, no matter how hard you try.
Please feel answered now, it's not what this means 'to you', we have told you what PALS report over and over and over, so we are telling you what 'it is'. Asking for more on this will be arguing back as we just can't be any clearer. This is a matter for you to discuss in detail with your doctor from this point forward. I truly wish you the best in sorting out what is going on with you.
Nikki (and others) - thank you. That post was very helpful in explaining how/why the term "weakness" is used. After the diagnoses with MD and the things I found I was no longer able to accomplish (without compensation) certainly was a bit eye opening if you understand what I'm saying. But yes, it most certainly sounds different. In that I can't get up from the ground without using my arms, but I can generate force.. Just not enough. Anyhow, I sincerely thank you all for taking the time and energy discussing with me and wish you nothing but the best in this battle.
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