Tauru_Verte
New member
- Joined
- Jan 23, 2021
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- VA
- City
- Culpepper
I’m a 37 year old male and I’ve been a guest here for some time and became a member about a week ago. ALS has been something I’ve been interested in for some time and I’m a monthly donor to the ALS Association’s research fund. I am no neurologist nor am I (hopefully) a PALS or a CALS, but because of my interest and concern about the topic, I’m a bit more informed than a lot of the posters in this forum. I’m well aware of the stats: 2-3 diagnoses per 100,000 and a lifetime chance that could be somewhere between 1 in 300 or 1 in 1000 (in other words, rare). I also know clinical weakness is the hallmark of the disease. Nevertheless, I find myself now in this forum wondering about some experiences I’m having and turning to people who know more than I do and have the lived experience in one form or another.
I have been experiencing fasiculations for several months—since about late October/early November. Calves, thighs/quads, and my glutes (and rarely abdomen). These don’t happen all the time but they’ve been an irritating presence and are certainly a daily or almost daily fixture—which was not the case prior to a few months ago (or at least not to this extent, everybody gets a twitch now and then).
I think these fasciculations may be a little less frequent than they were and actually their occurrence may vary with some days being worse than others. What got me concerned was the appearance of rapid twitching near my left shoulder last month—previously unaffected even when I had those intermittent other twitches. Thankfully this shoulder twitch is no longer as frequent as it was, but it does still occur occasionally. I know based on just 2 or 3 studies and some anecdotal evidence that fasciculations can sometimes be a presenting symptom, but this is generally not the case and that they can easily be and usually are benign or anxiety-induced or perhaps another condition (fibromyalgia, BFS, occasionally MS, etc.).
My calves sometimes have a tight feel to them—not quite a cramp, but something. It seems to be primarily the right calf and sometimes I think I can feel something there when I touch it—maybe it’s a muscle knot, although no stretching or hydration seem to make it go away. Maybe it’s all in my head. But I also know that the thigh and the hip of that same right leg sometimes feel a bit sore and stiff.
I remember Dr. Richard Olney, an ALS researcher who developed ALS himself, noticed “stiffness” in his shoulders and began to suspect he might have it. I believe he may have had some mild coordination issues as well, but I’m not quite clear. Yet at the beginning he didn’t present clinical weakness at first (and his diagnosis delayed by some spine issues too) and it was the stiffness that first caused him to consider a diagnosis of the illness he was researching to eliminate. Sometimes my right hip and my left shoulder (sometimes the right) feel a bit stiff but I don’t know how to distinguish between “normal” stiffness and ALS stiffness. And sometimes it does seem like I’m putting a bit more effort in when I’m holding things with my arms, but nothing I can’t actually do. (I know, it’s generally “failing” not “feeling”)
I’m taking some solace in the statistical odds and that early on I was experiencing some tingling (primarily in fingers) and other weird sensations. This tingling has recently returned more consistently though still intermittently so I’m hopeful it points to something else (and that it’s not something like a pinched nerve alongside ALS). Additionally, I seem to able to perform things normally (stairs, lifting, walking toe to toe, standing on one leg) with the caveat that there’s some stiffness/soreness at times beyond what I’ve previously experienced and there’s some occasional slight thigh trembling going downstairs (not all the time).
My PCP is a nurse practitioner and she finds me in generally good health. My physical at the end of October gave her no concerns but because of that initial tingling she did recommend I see a neurologist. I have a sort of attending neurologist because I also have Tourette’s Syndrome and had a possible MS scare 13 years ago. I’m finally getting in to see the neurologist next week although I got the impression any type of NCS/EMG wouldn’t happen for at least a month after that consultation (my PCP would like a NCS done, I’ve gotten mixed messages from the neuro staff if they were also doing an EMG when that happens, guess I’ll see what doc says next week).
My PCP saw me earlier this month for a follow-up on another matter and did look at my arm after the twitch developed but there was no twitch at the time—she didn’t seem terribly concerned and also pushed my arm around and said she didn’t hear any crunches and that it seemed to move fine as she manipulated it.
On many levels I’m not that concerned either, but now and then I become worried that these could be early symptoms and some of the stiffness/soreness are other muscles starting to pick up the slack for problematic ones—some type of early stage slow progression. I am hopeful it’s something benign and have also realized it could be MS based on my optic neuritis episode over a decade ago—it’s possible the tingling and some of the other “symptoms” could mean I have MS and experiencing my first relapse after a Clinically Isolated Syndrome event a decade ago (I know that’s nobody’s department here).
So basically I’m asking—am I being a little nuts? Letting the anxiety we all feel in the present Covid situation feed into the anxieties we all have on some level about our health? I’m going to the neuro regardless but it’d be nice to get a little feedback to help me through the next week.
I am continually amazed by this forum and am so impressed by so many PALS and CALS and am thankful that they take time out to talk to the DIHALSers and that they provide such great support for their fellow PALS and CALS. Some of the posts in the other forums have really moved me—I never post because I’m an “outsider”, but I’m with you in heart and spirit regardless. Someday we’ll know a world without ALS. Thank you for your time and any advice you can provide.
I have been experiencing fasiculations for several months—since about late October/early November. Calves, thighs/quads, and my glutes (and rarely abdomen). These don’t happen all the time but they’ve been an irritating presence and are certainly a daily or almost daily fixture—which was not the case prior to a few months ago (or at least not to this extent, everybody gets a twitch now and then).
I think these fasciculations may be a little less frequent than they were and actually their occurrence may vary with some days being worse than others. What got me concerned was the appearance of rapid twitching near my left shoulder last month—previously unaffected even when I had those intermittent other twitches. Thankfully this shoulder twitch is no longer as frequent as it was, but it does still occur occasionally. I know based on just 2 or 3 studies and some anecdotal evidence that fasciculations can sometimes be a presenting symptom, but this is generally not the case and that they can easily be and usually are benign or anxiety-induced or perhaps another condition (fibromyalgia, BFS, occasionally MS, etc.).
My calves sometimes have a tight feel to them—not quite a cramp, but something. It seems to be primarily the right calf and sometimes I think I can feel something there when I touch it—maybe it’s a muscle knot, although no stretching or hydration seem to make it go away. Maybe it’s all in my head. But I also know that the thigh and the hip of that same right leg sometimes feel a bit sore and stiff.
I remember Dr. Richard Olney, an ALS researcher who developed ALS himself, noticed “stiffness” in his shoulders and began to suspect he might have it. I believe he may have had some mild coordination issues as well, but I’m not quite clear. Yet at the beginning he didn’t present clinical weakness at first (and his diagnosis delayed by some spine issues too) and it was the stiffness that first caused him to consider a diagnosis of the illness he was researching to eliminate. Sometimes my right hip and my left shoulder (sometimes the right) feel a bit stiff but I don’t know how to distinguish between “normal” stiffness and ALS stiffness. And sometimes it does seem like I’m putting a bit more effort in when I’m holding things with my arms, but nothing I can’t actually do. (I know, it’s generally “failing” not “feeling”)
I’m taking some solace in the statistical odds and that early on I was experiencing some tingling (primarily in fingers) and other weird sensations. This tingling has recently returned more consistently though still intermittently so I’m hopeful it points to something else (and that it’s not something like a pinched nerve alongside ALS). Additionally, I seem to able to perform things normally (stairs, lifting, walking toe to toe, standing on one leg) with the caveat that there’s some stiffness/soreness at times beyond what I’ve previously experienced and there’s some occasional slight thigh trembling going downstairs (not all the time).
My PCP is a nurse practitioner and she finds me in generally good health. My physical at the end of October gave her no concerns but because of that initial tingling she did recommend I see a neurologist. I have a sort of attending neurologist because I also have Tourette’s Syndrome and had a possible MS scare 13 years ago. I’m finally getting in to see the neurologist next week although I got the impression any type of NCS/EMG wouldn’t happen for at least a month after that consultation (my PCP would like a NCS done, I’ve gotten mixed messages from the neuro staff if they were also doing an EMG when that happens, guess I’ll see what doc says next week).
My PCP saw me earlier this month for a follow-up on another matter and did look at my arm after the twitch developed but there was no twitch at the time—she didn’t seem terribly concerned and also pushed my arm around and said she didn’t hear any crunches and that it seemed to move fine as she manipulated it.
On many levels I’m not that concerned either, but now and then I become worried that these could be early symptoms and some of the stiffness/soreness are other muscles starting to pick up the slack for problematic ones—some type of early stage slow progression. I am hopeful it’s something benign and have also realized it could be MS based on my optic neuritis episode over a decade ago—it’s possible the tingling and some of the other “symptoms” could mean I have MS and experiencing my first relapse after a Clinically Isolated Syndrome event a decade ago (I know that’s nobody’s department here).
So basically I’m asking—am I being a little nuts? Letting the anxiety we all feel in the present Covid situation feed into the anxieties we all have on some level about our health? I’m going to the neuro regardless but it’d be nice to get a little feedback to help me through the next week.
I am continually amazed by this forum and am so impressed by so many PALS and CALS and am thankful that they take time out to talk to the DIHALSers and that they provide such great support for their fellow PALS and CALS. Some of the posts in the other forums have really moved me—I never post because I’m an “outsider”, but I’m with you in heart and spirit regardless. Someday we’ll know a world without ALS. Thank you for your time and any advice you can provide.