dave93
New member
- Joined
- Mar 26, 2021
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
Dear all
First and foremost, I would like to share my deepest and most sincere condolences towards all of you that suffer from ALS/PLS or the caretakers that help them out. It is by far one of the cruellest diseases that can affect a person and the courage necessary to stay strong and go through it is immensurable.
I've been browsing this forum for almost a year now but decided to avoid posting up until now. This is mainly because I realize the annoyance of the many various unnecessary posts by people that have done no research on the disease and just create confusion for members and external readers.
However, as I've been having symptoms for almost a year now, and some of these symptoms to some extent might be related to ALS, I would like to share what has been happening, hoping someone might give me some more insight.
To make it easier, I will bullet point some of the symptoms and give some additional info after:
- Proximal upper left limb weakness. While weakness, in the context of ALS, is described by most as clinical weakness or better as 'failure', this is not it. However, if using asthenia/fatigue as an alternative definition, this fits the bill. Essentially, from my elbow above, till my scapular wing, the entire area is fatigued. There is no restriction in range of movement and when applying maximum force, I can still raise or move objects but when doing things, like holding a pan or wrenching underneath the car, there is a perceptible lack of force which eventually causes the entire area to be in pain/burning. I'm aware pain/burning and lack of clinical weakness points away from ALS, but from what I've read, for many, the clinical weakness started as fatigue and because everything has to start from somewhere, I'm wondering whether this might be a case in which it is slowly progressive.
- Proximal/Distal (up to ankle) weakness/stiffness of the Leg: In this area, to me it feels like its a more pronounced form of weakness. The calf area tends to push the knee into hyperextention to support the quadricep. When going down the stairs, there is hesitation in flexion of the knee. When walking up the stairs, extra effort is require, and some pain around the patellar bone area is often present. Distal, in terms of the foot itself, beyond a sensation of stiffness doesn't exhibit any signs of weakness. Throughout the year, assuming it might have been a muscular deficit in strength, I did isometric exercises but that resulted only in increased sensation of stiffness in the leg.
- Fasciculations. A few months within this unilateral form of weakness/stiffness I also started noticing fasciculations. Widespread, around the entire body, from every area on the leg, to chest, to arms, with even a single occurrence of a day long spasm around the ocipital area of the head.
Now in regards to the medical examinations I’ve done:
- MRI spine and brain without contrast. Nothing remarkable.
- Two EMG with NCV, one in early November, one in late January. Nothing remarkable.
- Three visits to neurologists, routine neurological examinations (babinski, passive resistence movement, no clonus, no clasp knife etc.). I was deemed to not have any noticable neurological deficit
- Countless blood tests including blood count, many inflammatory markers including CK and Aldolase, Lyme test, Heavy Metal Test, Vitamins etc. etc. All negative or no remarkable values.
- Two visits to Orthopaedics. Nothing remarkable.
Obviously, all of the above, in conjunction with all the literature available through the forum and the online medical panels, points away from ALS. In theory, if I'm feeling weakness, then an EMG/NCV should have picked up at least something. Especially considering that it is capable of identifying problems before any weakness is even felt (famous 70% of muscle fibres die out before it becomes obvious). Furthermore, in the present at least, the lack of clear neurological deficits with no obvious UMN or LMN signs, points away from ALS.
This said, I have seen a few cases of people, with clean EMG's for years, eventually develop ALS in a mildly progressive form (mostly PLS). And because my symptoms are non-resolving, have become chronic (8 months and counting), I'm really starting to wonder if there is any possibility for it. Furthermore, fasciculations are a typical symptoms of motor neuron disease. Benign fasciculation syndrome is mostly present in people with no other symptoms. In my case, there definitely is a degree of weakness (asthenia) and stiffness (perceived at least), and I can't find any other disease that properly fits the criteria.
Considering distribution (Asymmetrical, proximal upper limb, proximal/distal lower limb, to some extent half of the face) the only alternatives that I could find are: FSHD (Dystrophy) but this would have been picked up by EMG/NCV or Multiple Sclerosis as a form of hemiparesis (MRI would have picked this up too but didn't).
I'm genuinely lost at this point, I hope it isn't ALS but it's hard for me to completely rule it out at this stage. If anyone can give me some insight, suggestions or any information at all this would be massively appreciated. Many of you on this forum are extremely knowledgeable, I hope someone can help...
And for those of you who have, thank you for reading all of the above, I truly appreciate it
One additional thing I forgot to mention is:
- Sensation of mild numbness/burning around left side of the face combined with occasional pressure around the left side of the head. This however isn't always present unlike the weakness mentioned in the other parts of the body. If related, and I can't tell for sure if it is to other symptoms, this can be considered a sensory symptom, pointing away from ALS. However, clean MRI also points away from the presence of a tumour or MS. MRI was done in September, when symptoms most symptomps where at an early phase. Going for a new MRI soon just in case.
First and foremost, I would like to share my deepest and most sincere condolences towards all of you that suffer from ALS/PLS or the caretakers that help them out. It is by far one of the cruellest diseases that can affect a person and the courage necessary to stay strong and go through it is immensurable.
I've been browsing this forum for almost a year now but decided to avoid posting up until now. This is mainly because I realize the annoyance of the many various unnecessary posts by people that have done no research on the disease and just create confusion for members and external readers.
However, as I've been having symptoms for almost a year now, and some of these symptoms to some extent might be related to ALS, I would like to share what has been happening, hoping someone might give me some more insight.
To make it easier, I will bullet point some of the symptoms and give some additional info after:
- Proximal upper left limb weakness. While weakness, in the context of ALS, is described by most as clinical weakness or better as 'failure', this is not it. However, if using asthenia/fatigue as an alternative definition, this fits the bill. Essentially, from my elbow above, till my scapular wing, the entire area is fatigued. There is no restriction in range of movement and when applying maximum force, I can still raise or move objects but when doing things, like holding a pan or wrenching underneath the car, there is a perceptible lack of force which eventually causes the entire area to be in pain/burning. I'm aware pain/burning and lack of clinical weakness points away from ALS, but from what I've read, for many, the clinical weakness started as fatigue and because everything has to start from somewhere, I'm wondering whether this might be a case in which it is slowly progressive.
- Proximal/Distal (up to ankle) weakness/stiffness of the Leg: In this area, to me it feels like its a more pronounced form of weakness. The calf area tends to push the knee into hyperextention to support the quadricep. When going down the stairs, there is hesitation in flexion of the knee. When walking up the stairs, extra effort is require, and some pain around the patellar bone area is often present. Distal, in terms of the foot itself, beyond a sensation of stiffness doesn't exhibit any signs of weakness. Throughout the year, assuming it might have been a muscular deficit in strength, I did isometric exercises but that resulted only in increased sensation of stiffness in the leg.
- Fasciculations. A few months within this unilateral form of weakness/stiffness I also started noticing fasciculations. Widespread, around the entire body, from every area on the leg, to chest, to arms, with even a single occurrence of a day long spasm around the ocipital area of the head.
Now in regards to the medical examinations I’ve done:
- MRI spine and brain without contrast. Nothing remarkable.
- Two EMG with NCV, one in early November, one in late January. Nothing remarkable.
- Three visits to neurologists, routine neurological examinations (babinski, passive resistence movement, no clonus, no clasp knife etc.). I was deemed to not have any noticable neurological deficit
- Countless blood tests including blood count, many inflammatory markers including CK and Aldolase, Lyme test, Heavy Metal Test, Vitamins etc. etc. All negative or no remarkable values.
- Two visits to Orthopaedics. Nothing remarkable.
Obviously, all of the above, in conjunction with all the literature available through the forum and the online medical panels, points away from ALS. In theory, if I'm feeling weakness, then an EMG/NCV should have picked up at least something. Especially considering that it is capable of identifying problems before any weakness is even felt (famous 70% of muscle fibres die out before it becomes obvious). Furthermore, in the present at least, the lack of clear neurological deficits with no obvious UMN or LMN signs, points away from ALS.
This said, I have seen a few cases of people, with clean EMG's for years, eventually develop ALS in a mildly progressive form (mostly PLS). And because my symptoms are non-resolving, have become chronic (8 months and counting), I'm really starting to wonder if there is any possibility for it. Furthermore, fasciculations are a typical symptoms of motor neuron disease. Benign fasciculation syndrome is mostly present in people with no other symptoms. In my case, there definitely is a degree of weakness (asthenia) and stiffness (perceived at least), and I can't find any other disease that properly fits the criteria.
Considering distribution (Asymmetrical, proximal upper limb, proximal/distal lower limb, to some extent half of the face) the only alternatives that I could find are: FSHD (Dystrophy) but this would have been picked up by EMG/NCV or Multiple Sclerosis as a form of hemiparesis (MRI would have picked this up too but didn't).
I'm genuinely lost at this point, I hope it isn't ALS but it's hard for me to completely rule it out at this stage. If anyone can give me some insight, suggestions or any information at all this would be massively appreciated. Many of you on this forum are extremely knowledgeable, I hope someone can help...
And for those of you who have, thank you for reading all of the above, I truly appreciate it
One additional thing I forgot to mention is:
- Sensation of mild numbness/burning around left side of the face combined with occasional pressure around the left side of the head. This however isn't always present unlike the weakness mentioned in the other parts of the body. If related, and I can't tell for sure if it is to other symptoms, this can be considered a sensory symptom, pointing away from ALS. However, clean MRI also points away from the presence of a tumour or MS. MRI was done in September, when symptoms most symptomps where at an early phase. Going for a new MRI soon just in case.
