Tiptop12
New member
- Joined
- Sep 17, 2021
- Messages
- 9
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- IR
Hi,
It's been a while since I've posted here. Again thanks so much for taking the time to read this. I know you have so much to contend with and even glancing at this is greatly appreciated .
Original post which automatically closed: Leg stiffness, difficulty walking and muscle fasciculations
I wanted to wait until I had some tests before posting.
Just a very quick recap : (17 months ago)
First symptoms started March 2021
Tightness, aches and pinching in legs (specifically quads) - Physiotherapy , no relief
June 2021 : Arms started to ache
August 2021 : Fasciculations and muscle spasms started in legs , spread to arms and shoulders, upper back , abdomen
and have continued to date.
October 2021: Pain and burning in upper arms and shoulders. First noticed atrophy in shoulders /upper arms (change in anatomy)- Bilateral dents in both shoulders (see photo from original post)
I've had a MRI of brain and full spine which showed nothing except minor disc bulge at C5/C6. Ck in bloods from October '21 was in a normal range.
Last month (June' 22) I had my first EMG. The neurologist who conducted observed fasciculations on the EMG - particularly calves and shoulders. She did say that she didn't see anything 'sinister'.
(maybe a BFS but results would have to be further analyzed as she said) . However she also said that if weakness presents then to return again .
Unfortunately I have not received official results (apologies for the lack of scientific data) as she said they would be sent to the original (referring) neurologist. The original neurologist and secretary have not been contactable for the last number of weeks. I'm a little in limbo at the moment.
That aside , my fasciculations and spasms have continued all over but I've sort of learned to live with them and try to ignore them as best as possible (11months). I have tried to take the positives from the EMG and even joined a gym (once a week) and go running.
My legs can be quite stiff but I can push through it. Both my shoulders and upper arms however continue to ache and in particular my right shoulder. During a run my right shoulder tightens up and I find it difficult to move.
It feels as if tissue, cartilage or muscle is missing. Also after a weeks work symptoms seem to be more aggravated.
I haven't experienced much weakness but more pain and discomfort around inner upper arm - anterior deltoid and down (which makes some movements sometimes awkward and hence I may appear weak).
Sometimes I feel perceived weakness down the right arm and reaction time to grip something is slower.
1. I still do think about a MND (including ALS) --Could this be atypical or slow progress ? Flail arm syndrome ?
2. Could this be more of an upper motor issue ( the fact that EMG hasn't shown anything major - however I would prefer proper results) . In my original clinical exam I had brisk reflexes in both legs.
I can see the differences in shoulders / upper arms between photos of now and two years ago. The skin is looser now , less bulk, skin flickers as I move my arm and the dent looks bigger - like a pit at front of shoulder. (where I experience the pain and discomfort) .
Also bone protrudes more (acromion process) especially in the right shoulder. The GP did think there was atrophy but the neurologists weren't too concerned. My wife also acknowledges the changes.
In the gym I have carried out some weight exercises that target these areas hoping that the muscle bulk will recover but no effect (sometimes I wonder if I'm causing further atrophy).
I have tried physical therapy and deep sports massages - these give a bit of relief in the short term but realistically not changing much. The EMG neurologist's general opinion was that if I haven't experienced any weakness /failure at this stage then I'm probably ok. She did acknowledge the unusual anatomy. Does any of this sound familiar to anyone ?
In general I'm pushing on with life , ignoring the fasciculations and general arm/ shoulder discomfort. I have 2 children so I don't have a choice. However every time I see my shoulders in the mirror (further thinning) or the shoulder pain becomes intense its difficult to put it to the back of the mind.
Overall I can function relatively well, energy levels are ok but my body has been in a general state of discomfort for 17 months or so. My symptoms feel slow but progressive.
Again thank you so much for reading and greatly appreciate your insights.
It's been a while since I've posted here. Again thanks so much for taking the time to read this. I know you have so much to contend with and even glancing at this is greatly appreciated .
Original post which automatically closed: Leg stiffness, difficulty walking and muscle fasciculations
I wanted to wait until I had some tests before posting.
Just a very quick recap : (17 months ago)
First symptoms started March 2021
Tightness, aches and pinching in legs (specifically quads) - Physiotherapy , no relief
June 2021 : Arms started to ache
August 2021 : Fasciculations and muscle spasms started in legs , spread to arms and shoulders, upper back , abdomen
and have continued to date.
October 2021: Pain and burning in upper arms and shoulders. First noticed atrophy in shoulders /upper arms (change in anatomy)- Bilateral dents in both shoulders (see photo from original post)
I've had a MRI of brain and full spine which showed nothing except minor disc bulge at C5/C6. Ck in bloods from October '21 was in a normal range.
Last month (June' 22) I had my first EMG. The neurologist who conducted observed fasciculations on the EMG - particularly calves and shoulders. She did say that she didn't see anything 'sinister'.
(maybe a BFS but results would have to be further analyzed as she said) . However she also said that if weakness presents then to return again .
Unfortunately I have not received official results (apologies for the lack of scientific data) as she said they would be sent to the original (referring) neurologist. The original neurologist and secretary have not been contactable for the last number of weeks. I'm a little in limbo at the moment.
That aside , my fasciculations and spasms have continued all over but I've sort of learned to live with them and try to ignore them as best as possible (11months). I have tried to take the positives from the EMG and even joined a gym (once a week) and go running.
My legs can be quite stiff but I can push through it. Both my shoulders and upper arms however continue to ache and in particular my right shoulder. During a run my right shoulder tightens up and I find it difficult to move.
It feels as if tissue, cartilage or muscle is missing. Also after a weeks work symptoms seem to be more aggravated.
I haven't experienced much weakness but more pain and discomfort around inner upper arm - anterior deltoid and down (which makes some movements sometimes awkward and hence I may appear weak).
Sometimes I feel perceived weakness down the right arm and reaction time to grip something is slower.
1. I still do think about a MND (including ALS) --Could this be atypical or slow progress ? Flail arm syndrome ?
2. Could this be more of an upper motor issue ( the fact that EMG hasn't shown anything major - however I would prefer proper results) . In my original clinical exam I had brisk reflexes in both legs.
I can see the differences in shoulders / upper arms between photos of now and two years ago. The skin is looser now , less bulk, skin flickers as I move my arm and the dent looks bigger - like a pit at front of shoulder. (where I experience the pain and discomfort) .
Also bone protrudes more (acromion process) especially in the right shoulder. The GP did think there was atrophy but the neurologists weren't too concerned. My wife also acknowledges the changes.
In the gym I have carried out some weight exercises that target these areas hoping that the muscle bulk will recover but no effect (sometimes I wonder if I'm causing further atrophy).
I have tried physical therapy and deep sports massages - these give a bit of relief in the short term but realistically not changing much. The EMG neurologist's general opinion was that if I haven't experienced any weakness /failure at this stage then I'm probably ok. She did acknowledge the unusual anatomy. Does any of this sound familiar to anyone ?
In general I'm pushing on with life , ignoring the fasciculations and general arm/ shoulder discomfort. I have 2 children so I don't have a choice. However every time I see my shoulders in the mirror (further thinning) or the shoulder pain becomes intense its difficult to put it to the back of the mind.
Overall I can function relatively well, energy levels are ok but my body has been in a general state of discomfort for 17 months or so. My symptoms feel slow but progressive.
Again thank you so much for reading and greatly appreciate your insights.