AndyBoston
New member
- Joined
- May 11, 2024
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MA
- City
- Boston
Hi all,
Thank you for those who put in the effort to maintain these forums and promote important discussions and a community support network.
Based on reading about some others on this thread, I am concerned that my symptoms could be pre-clinically diagnosable ALS.
My baseline physical fitness was very good. In December, I would easily run 4 miles up hills, and go up and down all the steps in a football stadium along with push-ups and core work and be good for another workout the next day. Starting sometime in January I had a strong twitch on my inner left thigh. I did not think that much about it except that it did not go away. Eventually in late February, the twitching spread to top and bottom of both thighs and glutes. Along with some occasional twitching elsewhere. At the same time, I had noticed a gradual but perceptible decrease in my weight lifting and running abilities. I am not a person who previously would just twitch from either stress or high physical exertion.
Around the start of March I started also to have early waking. I would just wake up 3-4 hours after going to sleep and for some reason could not go back to sleep. This is very bizarre because I have had many stressors in the past but could always sleep anyway and love sleep. I'm a person who at baseline could drink a cup of coffee and then just take a nap. But now it seemed the signals for sleep are all screwed up. I had even given up caffeine in middle of February and slept great those first ~2 weeks before this early waking started. Around this same time I noticed my temperature regulation seemed to be off. Especially with cold feet and legs, but sometimes one hand would be cold and the other hot. It's now May and fairly warm in Boston, but I'm still wearing wool socks to keep my feet warm, which was not the case in past years.
I was rather worried, so I had an EMG in mid-March on right arm and right leg and one spot on left tricep and two spots on left thigh where the twitching began. This test came back normal. Though my understanding is the EMG is stochastic in sampling muscle groups. From reading here and elsewhere, there could be some potential issue that is not detected if it is very early. I was at first relieved, but the very next day I tried to play ultimate frisbee and my legs could not get up to my normal sprint speed from just two months prior. It was as if the fast twitch muscles were dialed down or there was mud preventing me from hitting max speed.
I was still doing some rowing and weight lifting classes at this time but not running. Around the end of March, from one week to the next, I noticed a significant decrease in my strength to be able to row or lift weights. I had also been doing physical therapy (PT) about the same time I noticed I couldn't sprint and have noticed a consistent progressive decrease in my leg strength capabilities at PT. At one point, I had my PT do a dynamometer for the max torque I could apply with my quads and hamstrings based on my weight and height. The reading was ~1.9 Nm/kg. In his words: "We typically want those numbers over 2.2 for return to jumping/landing, 2.5 for return to run progression, and 3.0 for full return to sport. Your numbers were 1.9 which are not far off, but definitely lacking some strength compared to bodyweight." I was easily sprinting and running in December, without any known injuries, so I don't know what could have caused this decrease in max strength of my legs.
In the beginning of April, the twitching became more widespread to other parts of my body, including feet, finger tips, trunk, neck, and cheeks. At that time I also noticed decrease in my strength in my hands and arms relative to baseline. Since then, I have had subtle but progressive decrease in my strength relative to baseline in legs and arms. I've also been fatiguing much more easily. Around the start of April, I also noticed the larger changes in my gut microbiome with more GI distress. It also seems like I have to eat far more calories than before to maintain weight while I'm doing far less exercise relative to baseline because of the decrease in muscle strength and fatigue. In response, I actually have switched my eating habits to try to be healthy with yogurts, avocado, nuts, berries, fish, chicken, good oils, kefir, etc. But I am still having the GI distress and change in my stool compared to baseline.
I have seen three neuromuscular specialists about this. The first one said my clinical exam is normal and dismissed me out of hand and attributed my issues to anxiety, which was fairly insulting. I managed to get a cancellation appointment at the end of April with Dr. Berry at MGH and one of the fellows. They definitely took my concerns very seriously about ALS but since the clinical exam was normal, they put in tests searching for other potential myopathies, all of which have come back normal. They scheduled follow-ups and an EMG in mid-June to check for any progression.
By chance, there was a cancellation at BIDMC this past week, so I figured why not take up another opinion. It was with Dr. McIlduff and one of the residents. They actually were the most thorough of all three. They empathized and expressed as much concern as they could though the clinical exam was normal. I basically asked them what I can do in the meanwhile, and they said having the follow-up EMG and monitoring at MGH is good and otherwise to just monitor changes. They also gave me a list of supplements they'd prescribe people with neuromuscular issues that I could consider, including Co-enzyme Q10, L-carnitine, magnesium triple complex, vitamin B complex, Vitamin C. While trying to sleep, I've also been having spasms (no cramps though) at random around my arms, legs, chest, and even head. The BIDMC folks suggests I could do 300 mg gabapentin which might help that and also would be sedative before bed, as one option. Curious what folks think about that.
I know there are several people on this forum who said their first recognizable symptoms were GI issues, insomnia, changes in their exercise abilities (especially those who are sports athletes like myself) that were not clinical weakness, before they ended up having clinical weakness.
More recent research definitively says there is a connection between ALS, gut microbiome/issues, sleep and circadian rhythm and that many folks often have the insomnia and gut/metabolic changes before being clinically diagnosed. I have the follow-up EMG scheduled in June to see if there are any changes from my baseline EMG in March. Is there anything I can do in the meanwhile? While understandable, it seems unfortunate that we cannot work to potentially treat ALS at an early stage before it satisfies Gold Coast criteria, since we know early treatment and access to care is generally always more helpful.
I was prescribed 7.5 mg mirtazapine to help with sleep for that I tried for ~a month, and it helped a bit, but I would still only sleep 5-6 hours if lucky and only get 2-3 REM cycles when I know the body needs 4-5 per night ideally to restore. From discussion with my doctor and reading these forums, I know its ill-advised to use the Z-drugs whether or not one has ALS as they mess with sleep architecture further.
Just this week, my doctor proscribed me Lexapro 5 mg to eventually taper up to 10 mg which I'm sure can't hurt my mood and the SSRI may help stabilize my gut a bit. I had to go off the mirtazapine then to avoid excess serotonin. I suggested low dose trazadone to help with sleep, and my doctor said we could reintroduce that after I've ramped up the Lexapro for a bit.
Because my sleep is so bad and seems to be connected to my gut issues, I am worried it is a cycle that could be tied to ALS. In the short term, my doctor prescribed low dose ativan at night to take as needed. It may be helpful with anxiety for sleep, but honestly when I'm in bed I feel pretty relaxed - I want to sleep but it just seems like my hormones aren't synced right. I decided to start taking 10 mg time release melatonin as well because if my circadian rhythm is messed up due to gut issues and serotonin, my body just might not be properly producing the melatonin needed to signal sleep. The combo seems to help somewhat, but I'm clearly not getting enough full REM cycles. I'm not sure what else might help besides good eating and meditation, if there's something screwed up in my circadian rhythm tied to my gut, with or without possible ALS. Maybe CBD or CBN?
I also started taking a couple probiotics with HA-114 and akkermansia muciniphila, as I'm sure that won't hurt me one way or another.
In summary:
1) What do people think about this progression re: ALS?
2) If it could be ALS, is there anything else I should do that I haven't already done?
3) Regardless of whether it could be ALS, does anyone have other recommendations for improving my sleep architecture and gut microbiome based on their experience?
Thank you for your time.
Thank you for those who put in the effort to maintain these forums and promote important discussions and a community support network.
Based on reading about some others on this thread, I am concerned that my symptoms could be pre-clinically diagnosable ALS.
My baseline physical fitness was very good. In December, I would easily run 4 miles up hills, and go up and down all the steps in a football stadium along with push-ups and core work and be good for another workout the next day. Starting sometime in January I had a strong twitch on my inner left thigh. I did not think that much about it except that it did not go away. Eventually in late February, the twitching spread to top and bottom of both thighs and glutes. Along with some occasional twitching elsewhere. At the same time, I had noticed a gradual but perceptible decrease in my weight lifting and running abilities. I am not a person who previously would just twitch from either stress or high physical exertion.
Around the start of March I started also to have early waking. I would just wake up 3-4 hours after going to sleep and for some reason could not go back to sleep. This is very bizarre because I have had many stressors in the past but could always sleep anyway and love sleep. I'm a person who at baseline could drink a cup of coffee and then just take a nap. But now it seemed the signals for sleep are all screwed up. I had even given up caffeine in middle of February and slept great those first ~2 weeks before this early waking started. Around this same time I noticed my temperature regulation seemed to be off. Especially with cold feet and legs, but sometimes one hand would be cold and the other hot. It's now May and fairly warm in Boston, but I'm still wearing wool socks to keep my feet warm, which was not the case in past years.
I was rather worried, so I had an EMG in mid-March on right arm and right leg and one spot on left tricep and two spots on left thigh where the twitching began. This test came back normal. Though my understanding is the EMG is stochastic in sampling muscle groups. From reading here and elsewhere, there could be some potential issue that is not detected if it is very early. I was at first relieved, but the very next day I tried to play ultimate frisbee and my legs could not get up to my normal sprint speed from just two months prior. It was as if the fast twitch muscles were dialed down or there was mud preventing me from hitting max speed.
I was still doing some rowing and weight lifting classes at this time but not running. Around the end of March, from one week to the next, I noticed a significant decrease in my strength to be able to row or lift weights. I had also been doing physical therapy (PT) about the same time I noticed I couldn't sprint and have noticed a consistent progressive decrease in my leg strength capabilities at PT. At one point, I had my PT do a dynamometer for the max torque I could apply with my quads and hamstrings based on my weight and height. The reading was ~1.9 Nm/kg. In his words: "We typically want those numbers over 2.2 for return to jumping/landing, 2.5 for return to run progression, and 3.0 for full return to sport. Your numbers were 1.9 which are not far off, but definitely lacking some strength compared to bodyweight." I was easily sprinting and running in December, without any known injuries, so I don't know what could have caused this decrease in max strength of my legs.
In the beginning of April, the twitching became more widespread to other parts of my body, including feet, finger tips, trunk, neck, and cheeks. At that time I also noticed decrease in my strength in my hands and arms relative to baseline. Since then, I have had subtle but progressive decrease in my strength relative to baseline in legs and arms. I've also been fatiguing much more easily. Around the start of April, I also noticed the larger changes in my gut microbiome with more GI distress. It also seems like I have to eat far more calories than before to maintain weight while I'm doing far less exercise relative to baseline because of the decrease in muscle strength and fatigue. In response, I actually have switched my eating habits to try to be healthy with yogurts, avocado, nuts, berries, fish, chicken, good oils, kefir, etc. But I am still having the GI distress and change in my stool compared to baseline.
I have seen three neuromuscular specialists about this. The first one said my clinical exam is normal and dismissed me out of hand and attributed my issues to anxiety, which was fairly insulting. I managed to get a cancellation appointment at the end of April with Dr. Berry at MGH and one of the fellows. They definitely took my concerns very seriously about ALS but since the clinical exam was normal, they put in tests searching for other potential myopathies, all of which have come back normal. They scheduled follow-ups and an EMG in mid-June to check for any progression.
By chance, there was a cancellation at BIDMC this past week, so I figured why not take up another opinion. It was with Dr. McIlduff and one of the residents. They actually were the most thorough of all three. They empathized and expressed as much concern as they could though the clinical exam was normal. I basically asked them what I can do in the meanwhile, and they said having the follow-up EMG and monitoring at MGH is good and otherwise to just monitor changes. They also gave me a list of supplements they'd prescribe people with neuromuscular issues that I could consider, including Co-enzyme Q10, L-carnitine, magnesium triple complex, vitamin B complex, Vitamin C. While trying to sleep, I've also been having spasms (no cramps though) at random around my arms, legs, chest, and even head. The BIDMC folks suggests I could do 300 mg gabapentin which might help that and also would be sedative before bed, as one option. Curious what folks think about that.
I know there are several people on this forum who said their first recognizable symptoms were GI issues, insomnia, changes in their exercise abilities (especially those who are sports athletes like myself) that were not clinical weakness, before they ended up having clinical weakness.
More recent research definitively says there is a connection between ALS, gut microbiome/issues, sleep and circadian rhythm and that many folks often have the insomnia and gut/metabolic changes before being clinically diagnosed. I have the follow-up EMG scheduled in June to see if there are any changes from my baseline EMG in March. Is there anything I can do in the meanwhile? While understandable, it seems unfortunate that we cannot work to potentially treat ALS at an early stage before it satisfies Gold Coast criteria, since we know early treatment and access to care is generally always more helpful.
I was prescribed 7.5 mg mirtazapine to help with sleep for that I tried for ~a month, and it helped a bit, but I would still only sleep 5-6 hours if lucky and only get 2-3 REM cycles when I know the body needs 4-5 per night ideally to restore. From discussion with my doctor and reading these forums, I know its ill-advised to use the Z-drugs whether or not one has ALS as they mess with sleep architecture further.
Just this week, my doctor proscribed me Lexapro 5 mg to eventually taper up to 10 mg which I'm sure can't hurt my mood and the SSRI may help stabilize my gut a bit. I had to go off the mirtazapine then to avoid excess serotonin. I suggested low dose trazadone to help with sleep, and my doctor said we could reintroduce that after I've ramped up the Lexapro for a bit.
Because my sleep is so bad and seems to be connected to my gut issues, I am worried it is a cycle that could be tied to ALS. In the short term, my doctor prescribed low dose ativan at night to take as needed. It may be helpful with anxiety for sleep, but honestly when I'm in bed I feel pretty relaxed - I want to sleep but it just seems like my hormones aren't synced right. I decided to start taking 10 mg time release melatonin as well because if my circadian rhythm is messed up due to gut issues and serotonin, my body just might not be properly producing the melatonin needed to signal sleep. The combo seems to help somewhat, but I'm clearly not getting enough full REM cycles. I'm not sure what else might help besides good eating and meditation, if there's something screwed up in my circadian rhythm tied to my gut, with or without possible ALS. Maybe CBD or CBN?
I also started taking a couple probiotics with HA-114 and akkermansia muciniphila, as I'm sure that won't hurt me one way or another.
In summary:
1) What do people think about this progression re: ALS?
2) If it could be ALS, is there anything else I should do that I haven't already done?
3) Regardless of whether it could be ALS, does anyone have other recommendations for improving my sleep architecture and gut microbiome based on their experience?
Thank you for your time.
