trysmiling
New member
- Joined
- Mar 10, 2019
- Messages
- 5
- Reason
- Learn about ALS
- Country
- JP
- State
- fukui
- City
- fukui
Hello, I hope you are well or as well as possible.
Thank you for checking this thread and thank you for making this section of the forum. It must be very difficult for some members. Your patience for those of us with questions is greatly appreciated.
I've refrained from ALS symptom-checking on a message board like this for several months now in order to see how I progressed over time. However, some symptoms have gotten worse and some new ones have arisen and that's why I'm here now.
I have read the PLEASE READ FIRST section of this board.
Some symptoms I describe do not fit regular (or any) ALS presentation. I'm simply trying to give you a full picture of what has transpired to me in the past six months in case it rings any bells, even with something non-ALS related.
35/m currently being seen regularly by a neurologist (since November 2018 ) at a hospital in Japan where I live.
2018
Mid-Sept:
Began having sleep-onset hypnic jerks one month after a tonsillectomy. Very disturbing. Was put on Etizolam.
Mid-Nov:
Slight tremor developed in right pinky finger.
Early December:
Hypnic jerks diminished and disappeared after my soft palate (which dropped after surgery) expanded.
Mid-Dec:
I developed a thrombosed external hemorrhoid from a night being sick on the toilet. I've had hemorrhoids but this was extraordinarily painful. Two days later the hemorrhoid was surgically cut out in an out-patient procedure. This was a success. However, while waiting for this procedure I used the restroom and felt a sharp pain in my urethra.
The next day I felt a 'unsatisfied' feeling upon voiding. Saw a urologist, had urinalysis, was told everything was fine.
Late-Dec:
The tremor persisted and seemed to spread to my left fingers as well.
First sign of either potential weakness or tremor on my arm was while riding a subway and holding a strap. I rested my head on my inner elbow as I normally do in the subway and my arm started shaking. I cannot identify whether this was weakness or postural tremor.
The UTI-like symptoms continued with my symptoms being frequency and urgency (no incontinence). I saw a urologist in the US during holiday who DXd prostatitis and gave me a week of antibiotics.
The tremor persisted in my fingers and now hands.
The UTI-like symptoms vanished on Dec 31st.
2019
January
The UTI-like symptoms returned in mid January. Clean urinalysis. Cystoscopy revealed normal bladder.
Tremor moved into my arm. Neurologist Rx'd Clonopin. Did not help.
Feb
Unintentional weight loss. Noticed thinning in my wrists. Fasics in thenar eminence that went away and seemed negligible.
Neurologist suggested possible 'essential tremor' and Rx'd Arotinolol which is like propranolol for the tremor. It's 'okay' but tremor is still present and becoming more prominent in finger/hands.
I began yoga for urinary urgency/frequency symptoms to try and stretch pelvic floor. I discover during this that my arms and legs tremble fiercely during normal stretches.
I noticed that my arms also tremble when supporting my body weight for push-ups, something that they did not do unless fatigued. (I lifted weights and ran regularly until the UTI symptoms began) I still do not know if this is the tremor or signs of increasing weakness.
Mar:
Hypnic jerks returned. Getting poor sleep without medication.
Currently on a number of meds for urinary symptoms. Some days it's hard to walk across a room without running for the toilet, some days it's not, but I almost always have an urge to void.
In addition to the unintentional weight loss, I noticed loss of muscle mass. I have gone through periods without weight lifting or jogging but I've never seen this much (or this quick) loss of muscle mass in my body. Regions are:
-Left and right brachialis and inner elbow
-Left tricep which appears to have largely vanished.
-Left and right muscles beside my kneecaps on the outside. I can feel tendons which my wife describes as 'unusual' for me.
-Left and right pectoral muscles.
(Note: The difference between left and right arm sizes is visible and have been noted not only by myself but also my gym owner and parents.)
The loss of muscle and being unable to define tremor vs muscle fatigue/weakness is what is giving me ALS-related concerns. I have read accounts of pALS where muscle weakness was a slow progression. And then I've read accounts where muscles simply ceased to function. Obviously mine have not simply ceased to function.
-I can still do 40 push-ups.
-I have a normal grip strength in my dominant right hand but my left is a bit lower than normal (10%) than my right.
-I do not feel fatigued.
However, when I take on certain poses or positions, my arms, legs or hands shake severely and given that I was fairly muscular, I simply don't know whether ALS would rob my of those functions slowly or at once. From my understanding, seeing it act on multiple limbs at once is unusual for ALS, but I've also read cases where both arms were affected at once.
I'd also like to mention that I have fasiculations in my calves (which I understand are usually harmless) but also in my upper arms. I'm willing to accept that they may be stress-induced, however, given the state of my left arm I'm concerned.
I've not yet discussed the muscle loss with my neurologist but I will be doing that ASAP.
(While the bladder symptoms don't seem to occur in ALS I wanted bring them up just in case they've been recognized by someone here in a related illness.)
The tldr is that along with the concern over muscle loss, I'm unable to attribute my shaking during muscle strain to weakness or tremor so I'd like your opinion on that given the number of limbs involved and my timeline.
Thank you so much for reading. I am more than happy to clarify any above statement or provide more information. You're an amazing group for setting up this board as a place to exchange valuable information.
Thank you for checking this thread and thank you for making this section of the forum. It must be very difficult for some members. Your patience for those of us with questions is greatly appreciated.
I've refrained from ALS symptom-checking on a message board like this for several months now in order to see how I progressed over time. However, some symptoms have gotten worse and some new ones have arisen and that's why I'm here now.
I have read the PLEASE READ FIRST section of this board.
Some symptoms I describe do not fit regular (or any) ALS presentation. I'm simply trying to give you a full picture of what has transpired to me in the past six months in case it rings any bells, even with something non-ALS related.
35/m currently being seen regularly by a neurologist (since November 2018 ) at a hospital in Japan where I live.
2018
Mid-Sept:
Began having sleep-onset hypnic jerks one month after a tonsillectomy. Very disturbing. Was put on Etizolam.
Mid-Nov:
Slight tremor developed in right pinky finger.
Early December:
Hypnic jerks diminished and disappeared after my soft palate (which dropped after surgery) expanded.
Mid-Dec:
I developed a thrombosed external hemorrhoid from a night being sick on the toilet. I've had hemorrhoids but this was extraordinarily painful. Two days later the hemorrhoid was surgically cut out in an out-patient procedure. This was a success. However, while waiting for this procedure I used the restroom and felt a sharp pain in my urethra.
The next day I felt a 'unsatisfied' feeling upon voiding. Saw a urologist, had urinalysis, was told everything was fine.
Late-Dec:
The tremor persisted and seemed to spread to my left fingers as well.
First sign of either potential weakness or tremor on my arm was while riding a subway and holding a strap. I rested my head on my inner elbow as I normally do in the subway and my arm started shaking. I cannot identify whether this was weakness or postural tremor.
The UTI-like symptoms continued with my symptoms being frequency and urgency (no incontinence). I saw a urologist in the US during holiday who DXd prostatitis and gave me a week of antibiotics.
The tremor persisted in my fingers and now hands.
The UTI-like symptoms vanished on Dec 31st.
2019
January
The UTI-like symptoms returned in mid January. Clean urinalysis. Cystoscopy revealed normal bladder.
Tremor moved into my arm. Neurologist Rx'd Clonopin. Did not help.
Feb
Unintentional weight loss. Noticed thinning in my wrists. Fasics in thenar eminence that went away and seemed negligible.
Neurologist suggested possible 'essential tremor' and Rx'd Arotinolol which is like propranolol for the tremor. It's 'okay' but tremor is still present and becoming more prominent in finger/hands.
I began yoga for urinary urgency/frequency symptoms to try and stretch pelvic floor. I discover during this that my arms and legs tremble fiercely during normal stretches.
I noticed that my arms also tremble when supporting my body weight for push-ups, something that they did not do unless fatigued. (I lifted weights and ran regularly until the UTI symptoms began) I still do not know if this is the tremor or signs of increasing weakness.
Mar:
Hypnic jerks returned. Getting poor sleep without medication.
Currently on a number of meds for urinary symptoms. Some days it's hard to walk across a room without running for the toilet, some days it's not, but I almost always have an urge to void.
In addition to the unintentional weight loss, I noticed loss of muscle mass. I have gone through periods without weight lifting or jogging but I've never seen this much (or this quick) loss of muscle mass in my body. Regions are:
-Left and right brachialis and inner elbow
-Left tricep which appears to have largely vanished.
-Left and right muscles beside my kneecaps on the outside. I can feel tendons which my wife describes as 'unusual' for me.
-Left and right pectoral muscles.
(Note: The difference between left and right arm sizes is visible and have been noted not only by myself but also my gym owner and parents.)
The loss of muscle and being unable to define tremor vs muscle fatigue/weakness is what is giving me ALS-related concerns. I have read accounts of pALS where muscle weakness was a slow progression. And then I've read accounts where muscles simply ceased to function. Obviously mine have not simply ceased to function.
-I can still do 40 push-ups.
-I have a normal grip strength in my dominant right hand but my left is a bit lower than normal (10%) than my right.
-I do not feel fatigued.
However, when I take on certain poses or positions, my arms, legs or hands shake severely and given that I was fairly muscular, I simply don't know whether ALS would rob my of those functions slowly or at once. From my understanding, seeing it act on multiple limbs at once is unusual for ALS, but I've also read cases where both arms were affected at once.
I'd also like to mention that I have fasiculations in my calves (which I understand are usually harmless) but also in my upper arms. I'm willing to accept that they may be stress-induced, however, given the state of my left arm I'm concerned.
I've not yet discussed the muscle loss with my neurologist but I will be doing that ASAP.
(While the bladder symptoms don't seem to occur in ALS I wanted bring them up just in case they've been recognized by someone here in a related illness.)
The tldr is that along with the concern over muscle loss, I'm unable to attribute my shaking during muscle strain to weakness or tremor so I'd like your opinion on that given the number of limbs involved and my timeline.
Thank you so much for reading. I am more than happy to clarify any above statement or provide more information. You're an amazing group for setting up this board as a place to exchange valuable information.
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