tgerb8
New member
- Joined
- Dec 14, 2021
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- AL
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.
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.