Brice
New member
- Joined
- Jan 24, 2019
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- FR
- State
- FR
- City
- Paris
(Sorry i first posted it by error in the general feed)
Hello everyone, first of all thank you for everyone contributing to this forum because I find it quite helpful to read about individual experiences.
I am writing here as I have been experiencing different health problems for a while.
Being usually quite sporty, i have started experiencing a lot of fatigue since the beggining of 2018 in parallel of swallowing problems associated with muscular pain around the thyroid area. Exams with otolaryngologist were normal except for a kyst found only in september 2018 which has apparently no link with the symptoms. From January 2018 to January 2019, difficulties swallowing got worst and vary from time to time with sometime the voice getting fatigued and modified. This can be very exhausting because of the difficulty to constantly swallow and being unable to swallow correctly as though I didn't have the strength to do so.
Everything else started around September 2018. First of all, during work when I was writing, my right hand started to get really tired after writing for a few minutes. In the weeks that followed it started to get stiff, weakness inceased and i felt a lack of coordination, sometimes letting forks or spoons fall when i was eating. But i can feel this especially when writing on the computer and shampooing, where fingers are really weak and slow and don't respond normally.
Right now, weakness symptoms are present both in the right hand, arm and foot and leg. Stiffness is really present in the right hand and since a few days in the neck. Breathing has started getting quite a pain since 2 months and vary depending on the fatigue. The most difficult symptom to deal with is that at a single effort like walking for 30min or lifting stuff, muscle get really weak and start to shake at effort. It is getting really difficult to get out of home and doing whatever activity because everything seem exhausting. Whereas weakness is localised to the right side, there is a real global fatigue and it is difficult to deal on an everyday basis, especially when breathing is impacted which can be stressful.
A last symptom that started in December 2018 are fasciculations which i have never had previously and are present on the whole body but especially on both calves (all the time) and on biceps from times to times. It feels like worms under the skin 24/7 and is really disturbing.
The exams I have done are brain MRI, lumbar punction, which where both clean, event-related potencial ? by neurologist, and an EMG of the right leg alone (don't lnow why as symtoms are especially present in the arm/hand area) which I will post just underneath and was apparently okay even if it was done quite quickly (5min for 2 muscles)
Both weakness and fasciculations become a nightmare everyday and I don't know what to do, I also noticed my right wrist getting smaller as i have been reducing my watch strap twice since the two last months and it is still loose. I will also post a picture just underneath.
Here is a video of the fasciculation, which can be seen beginning at 1:55 :
https://youtu.be/T5bB58gsNeg
I am still 27 so I know ALS is quite rare at this age, and i have not been thinking at all about that until the weakness started becoming really diffcult to deal with and the fasciculations appeared and persist all day.
Thank you all for your responses.
Hello everyone, first of all thank you for everyone contributing to this forum because I find it quite helpful to read about individual experiences.
I am writing here as I have been experiencing different health problems for a while.
Being usually quite sporty, i have started experiencing a lot of fatigue since the beggining of 2018 in parallel of swallowing problems associated with muscular pain around the thyroid area. Exams with otolaryngologist were normal except for a kyst found only in september 2018 which has apparently no link with the symptoms. From January 2018 to January 2019, difficulties swallowing got worst and vary from time to time with sometime the voice getting fatigued and modified. This can be very exhausting because of the difficulty to constantly swallow and being unable to swallow correctly as though I didn't have the strength to do so.
Everything else started around September 2018. First of all, during work when I was writing, my right hand started to get really tired after writing for a few minutes. In the weeks that followed it started to get stiff, weakness inceased and i felt a lack of coordination, sometimes letting forks or spoons fall when i was eating. But i can feel this especially when writing on the computer and shampooing, where fingers are really weak and slow and don't respond normally.
Right now, weakness symptoms are present both in the right hand, arm and foot and leg. Stiffness is really present in the right hand and since a few days in the neck. Breathing has started getting quite a pain since 2 months and vary depending on the fatigue. The most difficult symptom to deal with is that at a single effort like walking for 30min or lifting stuff, muscle get really weak and start to shake at effort. It is getting really difficult to get out of home and doing whatever activity because everything seem exhausting. Whereas weakness is localised to the right side, there is a real global fatigue and it is difficult to deal on an everyday basis, especially when breathing is impacted which can be stressful.
A last symptom that started in December 2018 are fasciculations which i have never had previously and are present on the whole body but especially on both calves (all the time) and on biceps from times to times. It feels like worms under the skin 24/7 and is really disturbing.
The exams I have done are brain MRI, lumbar punction, which where both clean, event-related potencial ? by neurologist, and an EMG of the right leg alone (don't lnow why as symtoms are especially present in the arm/hand area) which I will post just underneath and was apparently okay even if it was done quite quickly (5min for 2 muscles)
Both weakness and fasciculations become a nightmare everyday and I don't know what to do, I also noticed my right wrist getting smaller as i have been reducing my watch strap twice since the two last months and it is still loose. I will also post a picture just underneath.
Here is a video of the fasciculation, which can be seen beginning at 1:55 :
https://youtu.be/T5bB58gsNeg
I am still 27 so I know ALS is quite rare at this age, and i have not been thinking at all about that until the weakness started becoming really diffcult to deal with and the fasciculations appeared and persist all day.
Thank you all for your responses.