Yamato
New member
- Joined
- Nov 24, 2022
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- FR
Hello to all,
First of all, I would like to thank you for the time you take on this forum to answer to people like me, a 29-year-old man frightened by this terrible disease. I would also like to point out that English is not my mother tongue so I'm sorry in advance if everything is not perfectly understandable (maybe you know it, but the French suck at English)
My story is quite long so I will try to synthesize as much but if you don’t want to read everything, you can skip directly to parts 3 and 4.
1) About 4 or 5 years ago I started to feel some strange symptoms, some of my muscles would start to move by themselves and I would have tremors in my limbs after doing exercises or holding them in certain positions.
I obviously made the mistake of going to google and it immediately diagnosed me with als.
After a few weeks of anxiety, I managed to force my mind to forget about it by telling myself deep down "well if I have this disease which has no treatment anyway, I might as well pretend nothing happened and only worry about it if things evolve".
2) we now jump in time to the end of August 2022, I catch covid when I come back from vacations. It was the first time I caught it and at first it was what I imagined the disease to be, a kind of flu.
But on the 5th day everything changed, I had a sort of malaise in my shower, I had a strong feeling of dizziness and I had the feeling to have difficulty to breathe. My girlfriend took me directly to the emergency room, where they did 1 or 2 tests and told me to go home and that it would pass with some doliprane.
The day after this discomfort, a very big headache takes me, always accompanied by dizziness and does not leave me any more during more than 2 months. I've had migraines since childhood so I'm used to it and usually I just take a doliprane and it passes quickly. But there it was really something else, a huge pressure in the head, burning sensations behind the eyes, flashes of light when I closed my eyes to sleep, a permanent mental fog.
For that I was followed by a neurologist who prescribed me a treatment for migraines, an ophthalmologist who found tension in my eyes and who also prescribed me a treatment for that.
All these brain symptoms finally stopped around mid-November and what a relief!
3) Unfortunately it was followed by what brought me here today, since these cerebral symptoms disappeared, other more "physical" ones appeared. In order of appearance:
- First, pain in the front of the neck, next to the throat, which radiated to the jaws (first only on the right and then on the left but more slightly).
- Then an intense electric shock sensation that hit my whole right side (arm and leg) all at once while I was just sitting in a waiting room.
- Burning and tingling in the right arm only.
- Pain in the right hand and elbow and some kind of stiffness in the right hand.
- Permanent fasciculations (like popcorn) in my right calf and right foot, associated with a feeling of weakness in this leg, foot that tires faster when I lift it, feeling of knee that will "drop" when I walk.
- Then the same fasciculations appeared on my left leg about a month and a half after the right but without weakness. These fasciculations have never left me since late November even if there are periods of more or less intense.
- Fasciculations throughout the body (eyelids, lips, arms, fingers, neck, chin, shoulders...) but intermittent. And as explained above I have been used to it for 4-5 years.
- In January I had a kind of gastro that lasted 3 days and during this one, one night ago I woke up with a strange feeling in my mouth, as if my tongue were vibrating. The next day I didn’t have that feeling anymore but this time it was more like I had a hair on the back of my throat and on my tongue.
I noticed a little later, as this feeling continued and intensified, that it came from my uvula touching my tongue and giving me this feeling every time I swallowed. I noticed in the mirror that my uvula was leaning to the left.
I went to see an ent, who just told me to take a medication for 10 days, and then the sensation went away even if it comes back from time to time.
- Since the beginning of February, it is the symptom that worries me the most, I have more trouble articulating my sentences when I speak, my tongue seems heavy and tired, as well as a feeling of tension under my chin. I also feel like my voice is more nasal and I often need to clear my throat.
4) Medical examinations conducted:
I have seen my neurologist several times as these symptoms have developed and she has given me a lot of tests that have all returned normal.
- non-contrast spinal cord mri: benign discopathies at C5-C6 and L4-L5. A rheumatologist examined it and assured me that there could be no repercussions on my body.
- non-contrast brain mri: a benign cyst
- ncs of my arms: nothing but a "possible right ulnar radiation without axonal resonance"
- ncs of my legs: nothing at all
- Review of my reflexes: all normal and symmetrical, no babinski
- Emg of 2 muscles in my right leg (the one with weakness and permanent fasciculations): nothing at all according to my neurologist.
I should point out that all these tests were done before the last symptom, which is my speech problems.
Sorry I wrote such a big text and still I’m sure I forgot a lot of things seen as the last 6 months have been a hell of a mess with more scary symptoms than each other.
So finally, I have just a few questions:
Based on your experience, could it be als?
Is a simple emg performed on only 2 muscles of the same limb (right leg) enough to eliminate the disease, even with bulbar symptoms?
Thank you very much in advance for reading me.
First of all, I would like to thank you for the time you take on this forum to answer to people like me, a 29-year-old man frightened by this terrible disease. I would also like to point out that English is not my mother tongue so I'm sorry in advance if everything is not perfectly understandable (maybe you know it, but the French suck at English)
My story is quite long so I will try to synthesize as much but if you don’t want to read everything, you can skip directly to parts 3 and 4.
1) About 4 or 5 years ago I started to feel some strange symptoms, some of my muscles would start to move by themselves and I would have tremors in my limbs after doing exercises or holding them in certain positions.
I obviously made the mistake of going to google and it immediately diagnosed me with als.
After a few weeks of anxiety, I managed to force my mind to forget about it by telling myself deep down "well if I have this disease which has no treatment anyway, I might as well pretend nothing happened and only worry about it if things evolve".
2) we now jump in time to the end of August 2022, I catch covid when I come back from vacations. It was the first time I caught it and at first it was what I imagined the disease to be, a kind of flu.
But on the 5th day everything changed, I had a sort of malaise in my shower, I had a strong feeling of dizziness and I had the feeling to have difficulty to breathe. My girlfriend took me directly to the emergency room, where they did 1 or 2 tests and told me to go home and that it would pass with some doliprane.
The day after this discomfort, a very big headache takes me, always accompanied by dizziness and does not leave me any more during more than 2 months. I've had migraines since childhood so I'm used to it and usually I just take a doliprane and it passes quickly. But there it was really something else, a huge pressure in the head, burning sensations behind the eyes, flashes of light when I closed my eyes to sleep, a permanent mental fog.
For that I was followed by a neurologist who prescribed me a treatment for migraines, an ophthalmologist who found tension in my eyes and who also prescribed me a treatment for that.
All these brain symptoms finally stopped around mid-November and what a relief!
3) Unfortunately it was followed by what brought me here today, since these cerebral symptoms disappeared, other more "physical" ones appeared. In order of appearance:
- First, pain in the front of the neck, next to the throat, which radiated to the jaws (first only on the right and then on the left but more slightly).
- Then an intense electric shock sensation that hit my whole right side (arm and leg) all at once while I was just sitting in a waiting room.
- Burning and tingling in the right arm only.
- Pain in the right hand and elbow and some kind of stiffness in the right hand.
- Permanent fasciculations (like popcorn) in my right calf and right foot, associated with a feeling of weakness in this leg, foot that tires faster when I lift it, feeling of knee that will "drop" when I walk.
- Then the same fasciculations appeared on my left leg about a month and a half after the right but without weakness. These fasciculations have never left me since late November even if there are periods of more or less intense.
- Fasciculations throughout the body (eyelids, lips, arms, fingers, neck, chin, shoulders...) but intermittent. And as explained above I have been used to it for 4-5 years.
- In January I had a kind of gastro that lasted 3 days and during this one, one night ago I woke up with a strange feeling in my mouth, as if my tongue were vibrating. The next day I didn’t have that feeling anymore but this time it was more like I had a hair on the back of my throat and on my tongue.
I noticed a little later, as this feeling continued and intensified, that it came from my uvula touching my tongue and giving me this feeling every time I swallowed. I noticed in the mirror that my uvula was leaning to the left.
I went to see an ent, who just told me to take a medication for 10 days, and then the sensation went away even if it comes back from time to time.
- Since the beginning of February, it is the symptom that worries me the most, I have more trouble articulating my sentences when I speak, my tongue seems heavy and tired, as well as a feeling of tension under my chin. I also feel like my voice is more nasal and I often need to clear my throat.
4) Medical examinations conducted:
I have seen my neurologist several times as these symptoms have developed and she has given me a lot of tests that have all returned normal.
- non-contrast spinal cord mri: benign discopathies at C5-C6 and L4-L5. A rheumatologist examined it and assured me that there could be no repercussions on my body.
- non-contrast brain mri: a benign cyst
- ncs of my arms: nothing but a "possible right ulnar radiation without axonal resonance"
- ncs of my legs: nothing at all
- Review of my reflexes: all normal and symmetrical, no babinski
- Emg of 2 muscles in my right leg (the one with weakness and permanent fasciculations): nothing at all according to my neurologist.
I should point out that all these tests were done before the last symptom, which is my speech problems.
Sorry I wrote such a big text and still I’m sure I forgot a lot of things seen as the last 6 months have been a hell of a mess with more scary symptoms than each other.
So finally, I have just a few questions:
Based on your experience, could it be als?
Is a simple emg performed on only 2 muscles of the same limb (right leg) enough to eliminate the disease, even with bulbar symptoms?
Thank you very much in advance for reading me.