Hvsnnh
New member
- Joined
- Jul 30, 2024
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- DE
Dear all,
Thank you for all the effort you do and in providing support!
I (male, 31 years, Germany) am experiencing a bunch of symptoms starting in June 2024.
At the beginning of 2024 I was in total fear from all various diseases, especially cancer and hernia-disorders, thinking that my knee-pain may be osteosarcoma.
After I had an accident in the gym I imagined that I might developed an hernia between Stomach and oesophagus causing breathing and swallowing issues as well as reflux. Actually all was good after the gym for about 4 hours. When I laid down to sleep the same evening I experienced difficulties in swallowing and breathing and also a vibration under the rib. I panicked, was in the ER, ultrasound was done. Later on also a Gastroscopy was done with no findings except GERD and H. Pylori infection.
Against H. Pylori I was put on medication Pylera and pantoprazol for 10 days (consisting of Bismut, Metronidazol, tetracyclin and pantoprazole). I didn`t tolerate it well, had vibration sensation all over my body but especially in feet, stiffness especially of neck and also tremors in the extremities. Also had difficulties in swallowing and breathing and was really anxious and had globe sensation. I then was put on lexapro by my GP and got a lot of sweating in the night and occacional twitches on the body.
In the beginning of July I searched the internet for swallowing difficulties, stiffness and twitching in body. Off course google stated ALS as one possibility. I panicked and went to the ER and had a talk with the neurology there. Some tests were did.
To keep it short (I know unfortunately it is not short, apologies!), I will use bullet points for the happenings as of July 2024:
July 2024:
- was in the ER and talked to a neurologist who did some exams and took blood. All was good she stated, no abnormalities in blood.
I was reassured. The same evening at home I recognised frequent fasciculations on the left inner foot. They appear frequently but not always and they can be provoked by punching and poking. I started checking my body and was not able to work properly.
- visited a private neurologist who did ENG (or NLG) of all limbs and a EMG of left calf and stated all was fine except of anxiety and hypochondria.
August 2024:
- visited another private Neurologist who did also ENG (or NLG) of 2 limbs and EMG of all limbs. He recognised fasciculations in the inner left foot and rippling of my left calf after tensing.
Aug-Sept 2024:
- had a bunch of symptoms: twitching all over body. Not constantly but frequently and in different locations. Sometimes biceps, triceps, left and right shoulder. Especially left calf.
Oct: - experienced twitching of left quad always after waking up. It twitches for almost 30 minutes and close to each time after waking up and being in bed.
November 2024:
- Visited a neuromuscular specialist who said about himself to be an ALS specialist (diagnosing at least 1 ALS patient each month). He refused to make a check-up and just did an muscle-ultrasound of my left calf stating that no concerns as nothing was moving while on rest.
December 2024 - April 2025:
Bloodwork, conditions and Medication:
- MRI was done of neck, head and upper torso. Nothing found except a bulge in one
- low ferritin, low haemoglobin and low haematocrit. It is not extremely low but slightly lower that the reference frame.
- lexapro 5 mg each day (reduced from 10 mg due to gagging sensation).
- Use sometimes magnesium, iron supplementation and pantoprazole (agains reflux and stiff oesophagus)
- all other parameters are normal.
What do you guys think? My concerns are the twitching, the inbalance when getting up from bed, the dexterity in my right hand and the stiffnes in my left leg accompanied with smaller muscles in left leg and right hand-back.
Can bulbar ALS be missed in this constellation or should I completely trust the limb EMGs? (No EMG of bulbar muscles)
To whom should I reach out? (I was several times to neurologists and at medical massages and at GP).
Thank you for all the effort you do and in providing support!
I (male, 31 years, Germany) am experiencing a bunch of symptoms starting in June 2024.
At the beginning of 2024 I was in total fear from all various diseases, especially cancer and hernia-disorders, thinking that my knee-pain may be osteosarcoma.
After I had an accident in the gym I imagined that I might developed an hernia between Stomach and oesophagus causing breathing and swallowing issues as well as reflux. Actually all was good after the gym for about 4 hours. When I laid down to sleep the same evening I experienced difficulties in swallowing and breathing and also a vibration under the rib. I panicked, was in the ER, ultrasound was done. Later on also a Gastroscopy was done with no findings except GERD and H. Pylori infection.
Against H. Pylori I was put on medication Pylera and pantoprazol for 10 days (consisting of Bismut, Metronidazol, tetracyclin and pantoprazole). I didn`t tolerate it well, had vibration sensation all over my body but especially in feet, stiffness especially of neck and also tremors in the extremities. Also had difficulties in swallowing and breathing and was really anxious and had globe sensation. I then was put on lexapro by my GP and got a lot of sweating in the night and occacional twitches on the body.
In the beginning of July I searched the internet for swallowing difficulties, stiffness and twitching in body. Off course google stated ALS as one possibility. I panicked and went to the ER and had a talk with the neurology there. Some tests were did.
To keep it short (I know unfortunately it is not short, apologies!), I will use bullet points for the happenings as of July 2024:
July 2024:
- was in the ER and talked to a neurologist who did some exams and took blood. All was good she stated, no abnormalities in blood.
I was reassured. The same evening at home I recognised frequent fasciculations on the left inner foot. They appear frequently but not always and they can be provoked by punching and poking. I started checking my body and was not able to work properly.
- visited a private neurologist who did ENG (or NLG) of all limbs and a EMG of left calf and stated all was fine except of anxiety and hypochondria.
August 2024:
- visited another private Neurologist who did also ENG (or NLG) of 2 limbs and EMG of all limbs. He recognised fasciculations in the inner left foot and rippling of my left calf after tensing.
Aug-Sept 2024:
- had a bunch of symptoms: twitching all over body. Not constantly but frequently and in different locations. Sometimes biceps, triceps, left and right shoulder. Especially left calf.
Oct: - experienced twitching of left quad always after waking up. It twitches for almost 30 minutes and close to each time after waking up and being in bed.
November 2024:
- Visited a neuromuscular specialist who said about himself to be an ALS specialist (diagnosing at least 1 ALS patient each month). He refused to make a check-up and just did an muscle-ultrasound of my left calf stating that no concerns as nothing was moving while on rest.
December 2024 - April 2025:
- bunch of twitching symptoms. Fasciculations in inner left foot present. Had eye twitch for around 1 week non-stop but stopped then. Had lip twitch, eye-brow twitch that lasted for several hours.
- For around 1 month I had twitching in the quad muscle after tensing my left quad. To better understand it: I tensed the left quad and then relieved it, then it twitched for about 5 times.
- visited private neurologist from August 2024 and he did EMGs on left leg and right arm with needles. He inserted the needle 2 times in left quad, 2 times in left calf, 2 times in right forearm and 2 times in right biceps. Each needle insertion lasted for about 2 seconds (is it enough?) and he stated „You have a perfect EMG“. But still he referred me to a muscle specialist. That appointment will be in July.
- Globus sensation that comes and goes. No coughing or choking (at least not felt)
- twitching all over sometimes, but especially in left calf and quad.
- Potential Atrophy: Left quad is smaller than right quad. (Left quad around 57 cm, right quad around 60 cm). Also when tensing the left quad it ripples and there are fasciculations (fibers move like worms). Left Gastrocnemius medial head seems much smaller than the one of the right quad.
- Right hand back much more sinewy / stringy than the left one. Right m. interossei between small finger and ring finger seems extrem flat.
- Left calf feels stiff. Right hand dexterety is deteriotated.
- Feeling that left drop foot will develop soon. And it feels like left small toe is numb when walking (potentially cannot control it anymore?). Experienced balance issues that I feel come from the left leg.
- Since yesterday I have extreme globus sensation like someone pushes my neck / throat.
- I have frequent gagging sensation or dry heaving. On the other side I can touch the uvula without vomiting and it feels numb.
- As I think I have brisk reflexes in the knees but seems to be bilateral. Normal babinski and also normal abs reflex.
Bloodwork, conditions and Medication:
- MRI was done of neck, head and upper torso. Nothing found except a bulge in one
- low ferritin, low haemoglobin and low haematocrit. It is not extremely low but slightly lower that the reference frame.
- lexapro 5 mg each day (reduced from 10 mg due to gagging sensation).
- Use sometimes magnesium, iron supplementation and pantoprazole (agains reflux and stiff oesophagus)
- all other parameters are normal.
What do you guys think? My concerns are the twitching, the inbalance when getting up from bed, the dexterity in my right hand and the stiffnes in my left leg accompanied with smaller muscles in left leg and right hand-back.
Can bulbar ALS be missed in this constellation or should I completely trust the limb EMGs? (No EMG of bulbar muscles)
To whom should I reach out? (I was several times to neurologists and at medical massages and at GP).
