opusensemble
Member
- Joined
- Nov 1, 2018
- Messages
- 13
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- PT
- State
- NY
- City
- Leiria
Dear friends,
My story so far was an impressive story of fight for survival.
5 years ago I had a severe adverse reaction to an antidepressant and became bedridden and in extreme suicidal agony for 4 long years. My research was too incredible and extense to condense in a thick collection of books. And incredibly, in 2017 I was able to conquer the severe treatment resistant depression, against all voices from more than 20 doctors, that claimed like quacks that DBS surgery was my last hope, and I proved them all wrong, and was finally free from psychiatry.
I was back to life and thankful to God that I had been given a new lease on life.
I am Portuguese, male, 41, and got a temporary job in Canada last winter and went there extremely optimistic about my future.
Little did so know about what was about to happen. In January this year, the day I was dismantling the stage backdrop in a Toronto's Exhibition Center and I noticed that my left thumb lost its dexterity. Back at home I was coding and noticed that the dexterity loss was severe as I could no longer use that thumb on the Ctrl key which effectively handicapped me from doing computer work, as I had extreme difficulty getting used to that new reality.
That symptom persisted and although the dexterity was regained in the weeks that followed, that thumb and hand became stiff ever since, and i found myself with extreme difficulty moving my left leg. I recall walking 2km at late hours to Walmart to buy Aspirin, thinking I was having a stroke. I took several Aspirin pills but the symptoms were unchanged.
A full month passed and the symptoms were constant stiffness in my left hand and left foot. I had no access to healthcare in Canada so came back to Portugal and did an MRI which was clean. I assumed that I probably just needed to rest, and since April I've been essentially in bed, avoiding stress as possible, eating the best I can, doing gentle exercises, and waiting for my symptoms to go away.
Meanwhile things only got worse. Over the last 4 months the stiffness spread to my both hands, feet, calves and forearms, with this strange sensation that my toes and fingers are curled although they don't look like curled. I still have normal range of motion and strength and have no noticeable signs of muscle atrophy but I feel incredibly stiff. I have no hyperreflexia or slurred speech that I or others can tell, and my family wouldn't be able to guess that I feel so stiff as I was very sedentary for years due to the depression so they don't notice anything wrong with my movements.
How I perceive it is however entirely different. I am not depressed, and basically unable to work for 10 months now because of this problem.
Last month I did a full spine MRI which showed no spinal cord lesions or compressions and a veey complete bloodwork panel from STDs, to thyroid function, to electrolytes, to vitamins and minerals, to antinuclear antibodies, CRP, etc and only my testosterone had the levels of sick 100 year old: around 215. I started taking some supplements and exercising more and discarded it as likely cause of the stiffness.
Coincidentally, over the last months I have developed crazy stiffness. All muscles below my neck, specially in my limbs have started twitching in some random areas, then fasciculating frequently too, and above all developed a low grade buzzing sensation, which I describe as electrical fibrillation in my left foot, left leg and left hand mostly so far. But the twitching is spread all over and tends to be accompanied with localized fasciculations in random muscles. This constant twitching and fibrillations make me feel my legs wired constantly, and if I could count them I would probably have some 30+ events like these per minute below my neck, from subtle sensations to noticeable visibly. To the point that they are keeping me awake at night.
I have no other symptoms so far. Before this avalanche of twitching and fibrillations increased in intensity I was still thinking that it could be MS, but with clean MRI scan it all points to ALS now.
I have found easily on Google several ALS stories that started just like me, with stiffness and twitching. And specially after having seen a research article that mentions EMG fibrillations as an Hallmark of ALS, I guess this is too obvious, and although I didn't have an EMG yet, my intuition tells me that in the moment they stick electrodes do my muscle, all sorts of electrical fibrillations will be picked up in a very dirty chart.
I never felt my body like this and feel I am deteriorating very fast, as if my nerves were dying and melting giving signs of fibrillation while the connections to the muscles die-off. This is the best I can describe it but seems very consistent with the whole process of ALS progression. Intuition tells me that soon I should start seeing increasing stiffness from my knees up, reduced muscle strength and atrophy.
I believe the next logical step is to get an EMG done, but the diagnosis appears quite clear at this point.
I would like to get the empathic opinion from the fellow sufferers in this group if you could be so kind, about the likelihood of a positive diagnosis after EMG.
Thank you all,
Joao
My story so far was an impressive story of fight for survival.
5 years ago I had a severe adverse reaction to an antidepressant and became bedridden and in extreme suicidal agony for 4 long years. My research was too incredible and extense to condense in a thick collection of books. And incredibly, in 2017 I was able to conquer the severe treatment resistant depression, against all voices from more than 20 doctors, that claimed like quacks that DBS surgery was my last hope, and I proved them all wrong, and was finally free from psychiatry.
I was back to life and thankful to God that I had been given a new lease on life.
I am Portuguese, male, 41, and got a temporary job in Canada last winter and went there extremely optimistic about my future.
Little did so know about what was about to happen. In January this year, the day I was dismantling the stage backdrop in a Toronto's Exhibition Center and I noticed that my left thumb lost its dexterity. Back at home I was coding and noticed that the dexterity loss was severe as I could no longer use that thumb on the Ctrl key which effectively handicapped me from doing computer work, as I had extreme difficulty getting used to that new reality.
That symptom persisted and although the dexterity was regained in the weeks that followed, that thumb and hand became stiff ever since, and i found myself with extreme difficulty moving my left leg. I recall walking 2km at late hours to Walmart to buy Aspirin, thinking I was having a stroke. I took several Aspirin pills but the symptoms were unchanged.
A full month passed and the symptoms were constant stiffness in my left hand and left foot. I had no access to healthcare in Canada so came back to Portugal and did an MRI which was clean. I assumed that I probably just needed to rest, and since April I've been essentially in bed, avoiding stress as possible, eating the best I can, doing gentle exercises, and waiting for my symptoms to go away.
Meanwhile things only got worse. Over the last 4 months the stiffness spread to my both hands, feet, calves and forearms, with this strange sensation that my toes and fingers are curled although they don't look like curled. I still have normal range of motion and strength and have no noticeable signs of muscle atrophy but I feel incredibly stiff. I have no hyperreflexia or slurred speech that I or others can tell, and my family wouldn't be able to guess that I feel so stiff as I was very sedentary for years due to the depression so they don't notice anything wrong with my movements.
How I perceive it is however entirely different. I am not depressed, and basically unable to work for 10 months now because of this problem.
Last month I did a full spine MRI which showed no spinal cord lesions or compressions and a veey complete bloodwork panel from STDs, to thyroid function, to electrolytes, to vitamins and minerals, to antinuclear antibodies, CRP, etc and only my testosterone had the levels of sick 100 year old: around 215. I started taking some supplements and exercising more and discarded it as likely cause of the stiffness.
Coincidentally, over the last months I have developed crazy stiffness. All muscles below my neck, specially in my limbs have started twitching in some random areas, then fasciculating frequently too, and above all developed a low grade buzzing sensation, which I describe as electrical fibrillation in my left foot, left leg and left hand mostly so far. But the twitching is spread all over and tends to be accompanied with localized fasciculations in random muscles. This constant twitching and fibrillations make me feel my legs wired constantly, and if I could count them I would probably have some 30+ events like these per minute below my neck, from subtle sensations to noticeable visibly. To the point that they are keeping me awake at night.
I have no other symptoms so far. Before this avalanche of twitching and fibrillations increased in intensity I was still thinking that it could be MS, but with clean MRI scan it all points to ALS now.
I have found easily on Google several ALS stories that started just like me, with stiffness and twitching. And specially after having seen a research article that mentions EMG fibrillations as an Hallmark of ALS, I guess this is too obvious, and although I didn't have an EMG yet, my intuition tells me that in the moment they stick electrodes do my muscle, all sorts of electrical fibrillations will be picked up in a very dirty chart.
I never felt my body like this and feel I am deteriorating very fast, as if my nerves were dying and melting giving signs of fibrillation while the connections to the muscles die-off. This is the best I can describe it but seems very consistent with the whole process of ALS progression. Intuition tells me that soon I should start seeing increasing stiffness from my knees up, reduced muscle strength and atrophy.
I believe the next logical step is to get an EMG done, but the diagnosis appears quite clear at this point.
I would like to get the empathic opinion from the fellow sufferers in this group if you could be so kind, about the likelihood of a positive diagnosis after EMG.
Thank you all,
Joao