Clee178
New member
- Joined
- Nov 6, 2020
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- TX
- City
- Austin
Hello- I have continued to come back to this forum and to the sticky for piece of mind for a month or so now but am at the point where I would appreciate any experiential perspective from either PALS or their caregivers on if any of what I describe is worth exploring further as potential ALS.
I am a 32 year old male and about 5 months ago I started noticing in my right hand that the dexterity seemed to be a bit off. My typing at work started to get a bit sloppy with emails and messages and picking things up like Quarters or my infant’s Cheerios on the counter felt “awkward” like my fingers locked (but not impossible or failing). I would drop keys or somethings occasionally when trying to position them in my hand quickly but not because they felt heavy or I couldn’t close my grip (I was working out at the time and could grip a heavy dumbbell) but again it’s like my muscle memory and dexterity was off when doing normal tasks. I also had slight tingling on the opposite (left) side of my body and some slight cognitive things but chalked it up to stress (COVID, recent move, baby, work).
About two months ago (3 months after that initial set of symptoms which continue) out of nowhere I had fasiculations all over my body (which I know is not how ALS typically presents itself and is meaningless without clinical weakness) and after 3 weeks of continuation (and then settling primarily in the hand/wrist/triceps/shoulder of the arm where the hand dexterity issue occurred originally) as well as the arm feeling fatigued, I thought I would get things checked out. Note they are primarily when at rest or happen after tensing a muscle up (I.e lift myself out of a chair and the tricep twitches, or texting makes my forearm twitch). At the same time I was waking up several times in the middle of the night with insomnia (still am) which I thought was odd as I’m normally a great sleeper through the night and just couldn’t figure out what could be causing this.
I went to my new PCP (recently moved) and he went through the standard neurological exam of reflexes, eyes, tongue, fast fingers (which I could do but again, my right hand seemed a bit slower than the left) , heel toe walking etc with no issues. No observable clinical weakness or atrophy. He said for piece of mind it would be good to get some blood work to see if it could be thyroid or other vitamin deficiencies and an MRI to rule out something like MS. Bloodwork was all normal with the exception of low vitamin D so started taking supplements but he didn’t think that would cause my symptoms. MRI showed nothing abnormal like a tumor or MS lesions and at this point he felt that that it could be anxiety related (which he prescribed me Zoloft and Xanax) however he also wanted to send me to a neurologist because it may be worth exploring ALS as a possibility given the twitching. I was somewhat familiar with ALS from a friend’s mother passing away and knew that statistically it would be a very low likelihood at my age and I was a bit perplexed as to why he would even think that.
When I got home I started searching for more information and of course certain things seemed plausible but then I found this amazing forum, the sticky and with that information set a follow up with my PCP to ask questions before seeing the neurologist . He did NOT do a great job of alleviating concerns. I referenced things like “failing v feeling” and his comment was that “it has to start somewhere and the slight hand/ forearm issue I mentioned to him even absent him observing any major failures in my exam felt it was worth investigating”... I referenced my age and the likelihood and he responded with “yes, but not impossible and there are unfortunate people at your age diagnosed”... needless to say I gave him opportunities to tell me this could be something far less serious and the neurologist may not be necessary, but he didnt...
I went to the neurologist (who came off a bit arrogant) a week ago who was extremely dismissive of the situation. I showed him the twitching hand, leg etc and He told me that my twitches were not true fasciculations as they typically have a “worm like pattern” and “this is the problem with Dr. Google”. I said given the twitching, perceived weakness and PCP referral could I at least get an EMG for piece of mind. He said he would be okay to see me in 6 months to see if symptoms progressed and did not think I had ALS at this point. He said to focus on anxiety and that he doesn’t recommend an EMG.
So here are my questions:
1) I have read these forums and see plenty of similarly situated people easily getting EMGs they request and wondering if I should go to a different neurologist and request it as I feel like if it shows clean (based on what I have read from this forum timing doesn’t matter and so clean now would be clean in 6 months) then I am okay and this truly is anxiety manifesting physically (or possibly something treatable/nerve related)
2) if you don’t think an EMG is necessary, why would my PCP be concerned enough to send me to a Neurologist who dismissed it immediately if it isn’t something I should explore further with an EMG?
3) the Neurologist wanting to see me in 6 months to see if things progress kind of made me uneasy.. if he was that dismissive at the time why even schedule a follow up? My mind goes to him wanting to see if it gets worse or if that would be better timing for an EMG which further fuels my concern and I’m not a fan of this “wait and see” with enough other things on my mind right now.
thank you all for your time and thoughts!
I am a 32 year old male and about 5 months ago I started noticing in my right hand that the dexterity seemed to be a bit off. My typing at work started to get a bit sloppy with emails and messages and picking things up like Quarters or my infant’s Cheerios on the counter felt “awkward” like my fingers locked (but not impossible or failing). I would drop keys or somethings occasionally when trying to position them in my hand quickly but not because they felt heavy or I couldn’t close my grip (I was working out at the time and could grip a heavy dumbbell) but again it’s like my muscle memory and dexterity was off when doing normal tasks. I also had slight tingling on the opposite (left) side of my body and some slight cognitive things but chalked it up to stress (COVID, recent move, baby, work).
About two months ago (3 months after that initial set of symptoms which continue) out of nowhere I had fasiculations all over my body (which I know is not how ALS typically presents itself and is meaningless without clinical weakness) and after 3 weeks of continuation (and then settling primarily in the hand/wrist/triceps/shoulder of the arm where the hand dexterity issue occurred originally) as well as the arm feeling fatigued, I thought I would get things checked out. Note they are primarily when at rest or happen after tensing a muscle up (I.e lift myself out of a chair and the tricep twitches, or texting makes my forearm twitch). At the same time I was waking up several times in the middle of the night with insomnia (still am) which I thought was odd as I’m normally a great sleeper through the night and just couldn’t figure out what could be causing this.
I went to my new PCP (recently moved) and he went through the standard neurological exam of reflexes, eyes, tongue, fast fingers (which I could do but again, my right hand seemed a bit slower than the left) , heel toe walking etc with no issues. No observable clinical weakness or atrophy. He said for piece of mind it would be good to get some blood work to see if it could be thyroid or other vitamin deficiencies and an MRI to rule out something like MS. Bloodwork was all normal with the exception of low vitamin D so started taking supplements but he didn’t think that would cause my symptoms. MRI showed nothing abnormal like a tumor or MS lesions and at this point he felt that that it could be anxiety related (which he prescribed me Zoloft and Xanax) however he also wanted to send me to a neurologist because it may be worth exploring ALS as a possibility given the twitching. I was somewhat familiar with ALS from a friend’s mother passing away and knew that statistically it would be a very low likelihood at my age and I was a bit perplexed as to why he would even think that.
When I got home I started searching for more information and of course certain things seemed plausible but then I found this amazing forum, the sticky and with that information set a follow up with my PCP to ask questions before seeing the neurologist . He did NOT do a great job of alleviating concerns. I referenced things like “failing v feeling” and his comment was that “it has to start somewhere and the slight hand/ forearm issue I mentioned to him even absent him observing any major failures in my exam felt it was worth investigating”... I referenced my age and the likelihood and he responded with “yes, but not impossible and there are unfortunate people at your age diagnosed”... needless to say I gave him opportunities to tell me this could be something far less serious and the neurologist may not be necessary, but he didnt...
I went to the neurologist (who came off a bit arrogant) a week ago who was extremely dismissive of the situation. I showed him the twitching hand, leg etc and He told me that my twitches were not true fasciculations as they typically have a “worm like pattern” and “this is the problem with Dr. Google”. I said given the twitching, perceived weakness and PCP referral could I at least get an EMG for piece of mind. He said he would be okay to see me in 6 months to see if symptoms progressed and did not think I had ALS at this point. He said to focus on anxiety and that he doesn’t recommend an EMG.
So here are my questions:
1) I have read these forums and see plenty of similarly situated people easily getting EMGs they request and wondering if I should go to a different neurologist and request it as I feel like if it shows clean (based on what I have read from this forum timing doesn’t matter and so clean now would be clean in 6 months) then I am okay and this truly is anxiety manifesting physically (or possibly something treatable/nerve related)
2) if you don’t think an EMG is necessary, why would my PCP be concerned enough to send me to a Neurologist who dismissed it immediately if it isn’t something I should explore further with an EMG?
3) the Neurologist wanting to see me in 6 months to see if things progress kind of made me uneasy.. if he was that dismissive at the time why even schedule a follow up? My mind goes to him wanting to see if it gets worse or if that would be better timing for an EMG which further fuels my concern and I’m not a fan of this “wait and see” with enough other things on my mind right now.
thank you all for your time and thoughts!
