Greetings,
As you can see below, I am sorry, but my post is long. If you don’t feel you have the current patience to read it, understood. Please only continue if you do. You will see from this post that I have thought long and hard about my symptoms before considering this post, and it’s not just an anxiety-induced whim. At the very least, I feel my anxiety is understandable – hopefully at the very most as well. If what I have below isn’t valid enough for me to worry about MND…I would be thankful for that fact, and sincerely apologize for wasting anyone’s time.
That said, it’s my anxiety about ALS that gives me all the more respect and compassion for those of you suffering through the real thing. I’m sure many of these statements from the worriers come across as hollow, but read it as you like...My heart truly goes out to those of you affected by this, directly or indirectly, whether you help with my fears or not. I have more than just one symptom, an EMG that was not 100% clean, and both LMN and UMN signs. I’ll admit there is a set of answers I want to hear, and that some of my fear has been driven by Dr. Google. But I realize no one here can diagnose. I also have a follow-up with my neuro in a few weeks that may provide answers on some of what I pose here.
Here are reasons I feel I may have it...I've listed them in order of significance. For symptoms, I’ve put in parentheses the sequence in which they occurred.
1) Weakness (neuro-confirmed) in a variety of places, but most pronounced in left leg. First observed by neuro two years ago before I noticed it myself. (2) Over time, I’ve noticed the left leg feels like it might give out and starts wobbling. (3)
2) The same leg is also very jumpy, confirmed by a reflex test over a year ago (4). Over the last two weeks, it's started jerking on occasion when at rest. The knee also buckles inward a bit when standing still for long periods of time. (7)
3) Constant twitching in both feet, but mostly left, for at least 2-3 years. It was the first symptom that prompted me to go to the neuro. (1) Over time, it’s spreading up into my ankles, shins, and calves. (5) Developing into cramps lately. (6)
4) As aforementioned, my EMG (just over two weeks ago) was not 100% clean in that leg (they only did left leg and arm). Neuro said it “could be” early-stage MND.
5) I’ve had a battery of tests focused on other possible causes that are mostly normal. The other causes they leave on the list don’t seem to fit my profile (more on this below).
However, I’m hoping this is a valid set of reasons why I may not have it. I’d of course love any of you to affirm that, or debunk any of the qualifiers that are based mostly on my Googlings.
1) Age - 28
2) Twitching was easily the first symptom I noticed.
3) There are still a number of other possible causes on the table, though I’ve listed qualifiers for each one below.
Pinched nerve – Mentioned by neuro after EMG. I’ve noticed that many of my habitual sitting positions place my right leg on or over the left, placing particular pressure on my ankle. I’ve just considered this since my EMG, so haven’t had the chance to pose that to the neuro yet. However, I understand peripheral nerve issues wouldn’t cause some of my symptoms. If so, any pinched nerve I have would have to be in my spinal area. I haven’t had any spinal MRIs at this point.
B12 deficiency - 100% confirmed I have it. But my understanding is its symptoms present equally across left and right, and more absent reflexes than brisk. This was just found recently since the EMG, and I’m going to discuss it more with the neuro on my follow-up in a few weeks.
Anxiety – As mentioned above. Again, I don’t know that the symptoms would progress like this, or be as asymmetrical, if it were the cause.
Neuropathy –The increased severity in one limb and the brisk reflex don’t suggest it.
MS – Has been mostly ruled out based on clean spinal tap and NCV. MRIs mostly unremarkable, but with “inconclusive” microlesions.
4) I experience tingling that often accompanies the twitching. But again, that could just be anxiety, and seems to just be worse during cold weather.
5) After over two years of symptoms, I am still fully functional, at least for now. I can also walk on heels, toes, stand on the weak leg, etc.
6) EMG comments from the neuro –
He said even though it could be MND, he only saw issues in one muscle group - the left calf. Said he’d expect issues in the others. But I’ve since read that EMG might only show up in one muscle group in early-stage MND, so I’m afraid he was only referring to late-stage.
If I’m recalling right, he didn’t see anything troubling on the foot in the EMG, which was my first spot of frequent twitching. So I’m hoping that’s a good sign.
7) Though the twitching is fairly constant, its severity comes and goes. For example, sometimes it’s better when I wake up in the morning. The nature also differs at times. I get the fine fluttery kind, and the more pronounced irregular type as well.
8) Symmetry – The twitching and cramping are always worse on the left, but often present in both legs at the same time. I also have had different degrees of weakness in my hands and arms as well, as observed by neuro. Not sure how significant that distribution is.
9) Both weakness and twitching have gotten noticeably worse since the EMG. I’m hopeful that just points to anxiety.
10) I was tested for Babinski in both feet, but wasn’t told the results. I was honestly too scared to ask after the PA did it.
I’m also worried my anxiety may have thrown off the results from tensing up the muscles, or that the PA did it wrong (she’d been on the job less than a year).
If a troublesome Babinski is something I would not have failed to notice on my own despite the above, I’d consider that a huge win. I just don’t know.
11) Other less frequent symptoms, that if related, point away from MND. I don’t get them frequently enough to be 100% confident they’re from the same cause...Tremors, dizziness, headaches, blurred vision, and less regular twitches in other places.
If you’ve had the patience to read this, I’ll shut up now and let you chime in with any thoughts. My true thanks to anyone who has taken the time, and my apologies if it doesn't pass the smell test. My thoughts and prayers will continue to be with you all.
As you can see below, I am sorry, but my post is long. If you don’t feel you have the current patience to read it, understood. Please only continue if you do. You will see from this post that I have thought long and hard about my symptoms before considering this post, and it’s not just an anxiety-induced whim. At the very least, I feel my anxiety is understandable – hopefully at the very most as well. If what I have below isn’t valid enough for me to worry about MND…I would be thankful for that fact, and sincerely apologize for wasting anyone’s time.
That said, it’s my anxiety about ALS that gives me all the more respect and compassion for those of you suffering through the real thing. I’m sure many of these statements from the worriers come across as hollow, but read it as you like...My heart truly goes out to those of you affected by this, directly or indirectly, whether you help with my fears or not. I have more than just one symptom, an EMG that was not 100% clean, and both LMN and UMN signs. I’ll admit there is a set of answers I want to hear, and that some of my fear has been driven by Dr. Google. But I realize no one here can diagnose. I also have a follow-up with my neuro in a few weeks that may provide answers on some of what I pose here.
Here are reasons I feel I may have it...I've listed them in order of significance. For symptoms, I’ve put in parentheses the sequence in which they occurred.
1) Weakness (neuro-confirmed) in a variety of places, but most pronounced in left leg. First observed by neuro two years ago before I noticed it myself. (2) Over time, I’ve noticed the left leg feels like it might give out and starts wobbling. (3)
2) The same leg is also very jumpy, confirmed by a reflex test over a year ago (4). Over the last two weeks, it's started jerking on occasion when at rest. The knee also buckles inward a bit when standing still for long periods of time. (7)
3) Constant twitching in both feet, but mostly left, for at least 2-3 years. It was the first symptom that prompted me to go to the neuro. (1) Over time, it’s spreading up into my ankles, shins, and calves. (5) Developing into cramps lately. (6)
4) As aforementioned, my EMG (just over two weeks ago) was not 100% clean in that leg (they only did left leg and arm). Neuro said it “could be” early-stage MND.
5) I’ve had a battery of tests focused on other possible causes that are mostly normal. The other causes they leave on the list don’t seem to fit my profile (more on this below).
However, I’m hoping this is a valid set of reasons why I may not have it. I’d of course love any of you to affirm that, or debunk any of the qualifiers that are based mostly on my Googlings.
1) Age - 28
2) Twitching was easily the first symptom I noticed.
3) There are still a number of other possible causes on the table, though I’ve listed qualifiers for each one below.
Pinched nerve – Mentioned by neuro after EMG. I’ve noticed that many of my habitual sitting positions place my right leg on or over the left, placing particular pressure on my ankle. I’ve just considered this since my EMG, so haven’t had the chance to pose that to the neuro yet. However, I understand peripheral nerve issues wouldn’t cause some of my symptoms. If so, any pinched nerve I have would have to be in my spinal area. I haven’t had any spinal MRIs at this point.
B12 deficiency - 100% confirmed I have it. But my understanding is its symptoms present equally across left and right, and more absent reflexes than brisk. This was just found recently since the EMG, and I’m going to discuss it more with the neuro on my follow-up in a few weeks.
Anxiety – As mentioned above. Again, I don’t know that the symptoms would progress like this, or be as asymmetrical, if it were the cause.
Neuropathy –The increased severity in one limb and the brisk reflex don’t suggest it.
MS – Has been mostly ruled out based on clean spinal tap and NCV. MRIs mostly unremarkable, but with “inconclusive” microlesions.
4) I experience tingling that often accompanies the twitching. But again, that could just be anxiety, and seems to just be worse during cold weather.
5) After over two years of symptoms, I am still fully functional, at least for now. I can also walk on heels, toes, stand on the weak leg, etc.
6) EMG comments from the neuro –
He said even though it could be MND, he only saw issues in one muscle group - the left calf. Said he’d expect issues in the others. But I’ve since read that EMG might only show up in one muscle group in early-stage MND, so I’m afraid he was only referring to late-stage.
If I’m recalling right, he didn’t see anything troubling on the foot in the EMG, which was my first spot of frequent twitching. So I’m hoping that’s a good sign.
7) Though the twitching is fairly constant, its severity comes and goes. For example, sometimes it’s better when I wake up in the morning. The nature also differs at times. I get the fine fluttery kind, and the more pronounced irregular type as well.
8) Symmetry – The twitching and cramping are always worse on the left, but often present in both legs at the same time. I also have had different degrees of weakness in my hands and arms as well, as observed by neuro. Not sure how significant that distribution is.
9) Both weakness and twitching have gotten noticeably worse since the EMG. I’m hopeful that just points to anxiety.
10) I was tested for Babinski in both feet, but wasn’t told the results. I was honestly too scared to ask after the PA did it.
I’m also worried my anxiety may have thrown off the results from tensing up the muscles, or that the PA did it wrong (she’d been on the job less than a year).
If a troublesome Babinski is something I would not have failed to notice on my own despite the above, I’d consider that a huge win. I just don’t know.
11) Other less frequent symptoms, that if related, point away from MND. I don’t get them frequently enough to be 100% confident they’re from the same cause...Tremors, dizziness, headaches, blurred vision, and less regular twitches in other places.
If you’ve had the patience to read this, I’ll shut up now and let you chime in with any thoughts. My true thanks to anyone who has taken the time, and my apologies if it doesn't pass the smell test. My thoughts and prayers will continue to be with you all.
), which doesn't help.
