SwissGuy35
New member
- Joined
- Apr 1, 2024
- Messages
- 8
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CH
- State
- LU
- City
- Hochdorf
Hello All
I posted twice about four months ago, see here (1st thread) and here (2nd thread, GP follow-up).
About a week after I last posted I developed dysphagia, all of a sudden I aspirated saliva, water, coffee, but not food. I had to cough up saliva or drink that should have gone past the trachea. I also noticed that my face, especially around the mouth, the lips and jaw was more stiff and so talking was a lot tiresome. I had to pay extra attention (or at least I felt that way) that I would articulate myself correctly without slurring. Nobody other than me ever heard me slur my words and I asked many people who know me many times. About a month later I began to notice that my right hand and forearm were heavier, less agile than before. I noticed that I hadn't that much force in my right side than I used to have, despite that I am right-handed. About End of May I noticed that I had trouble catching my breath. I was out of breath much earlier than I used to be, sometimes feeling the need to desperately suck in as much air as possible.
From mid April to now I am seeing a psychiatrist for my severe anxiety disorder. We tried upping Escitalopram from 10mg to 30mg (max. dose), no effect. So we switched to Sertraline. I can't tolerate more than 100mg due to nausea. No effect though. So due to worsening symptoms (I aspirated garlic oil once and had a choking feeling) my psychiatrist finally agreed that I was neurologically assessed. So last Monday (Jul 29) I was seen by a Neurologist (here in Switzerland called "Facharzt für Neurologie") and, what I absolutely did not expect to hear, he didn't find anything wrong. The report reads:
Assessment and suggestions for the procedure
The detailed anamnesis is already known. The clinical neurological examination reveals no abnormalities, in particular no paresis, no reflex differences, no fasciculations of the limb muscles, no fibrillations of the tongue.
The detailed electrodiagnostics are unremarkable, there are no indications of neuropathy or myopathy or even motor neuron disease. Against the background of the normal findings, the patient is reassured.
Clinical findings
Somatic neurological findings: Finger perimetric no evidence of visual field defect, normal oculomotor and pupullomotor function, normal sensory and motor function in the face, Halmagyi negative on both sides, normal caudal cranial nerves. Arm and leg hold tests normal. No paresis in the individual strength test. Normal muscle tone, regular muscle trophism. Lateral muscle reflexes lively on both sides, no pyramidal tract signs.
NCS (motor / sensitive) was normal. EMG was normal. Muscles tested in EMG:
Right side: M. masseter, M. biceps brachii, M. extensor digitorum, M. gastrocnemius caput mediale, M. tibialis anterior
Left side: M. gastrocnemius caput mediale
Comment on all muscles tested: Normally configured potentials in terms of amplitude level, potential duration and polyphasing rate. No pathological spontaneous activity, no fasciculations.
(Text translated with a machine from German to English, so may not be correct all the time)
I just wanted to give you guys a feedback what can come round in cases like mine. I still have the symptoms though, swallowing feels difficult, alien, "weak" for some reason, and of course there is the aspiration issue. The Neuro recommended to now focus on mental health which I will do, I will check in a Clinic soon for a few weeks. If symptoms persist after that I may be evaluated by an ENT, but at the moment not recommended by him.
Despite my endless fear of ALS, I was so sure I had it, the Neuro doesn't think I have it. I think I will go with this now and do what he and my psychiatrist advised and focus on my mental health.
I highly recommend anyone struggling with debilitating fear of ALS (or anything really), go see a Specialist and find out. It was the hardest thing I ever had to do, to see that doctor and be assessed for I had thought I knew the answer. I didn't. I don't have answers to my symptoms, at least not all of them, but I have some now. The "doubt monster" will always interfere with anxiety patients like me, and it does even now. What if the Neuro didn't test enough muscles, not the correct (bulbar) muscles etc. I must learn to trust I guess.
I thank you guys for your answers you have provided and I wish you all the best what can be.
PS. This thread can be closed after a while, I just wanted to give some insight and hope to others suffering from the same uncertainty.
With respect and love from Switzerland
I posted twice about four months ago, see here (1st thread) and here (2nd thread, GP follow-up).
About a week after I last posted I developed dysphagia, all of a sudden I aspirated saliva, water, coffee, but not food. I had to cough up saliva or drink that should have gone past the trachea. I also noticed that my face, especially around the mouth, the lips and jaw was more stiff and so talking was a lot tiresome. I had to pay extra attention (or at least I felt that way) that I would articulate myself correctly without slurring. Nobody other than me ever heard me slur my words and I asked many people who know me many times. About a month later I began to notice that my right hand and forearm were heavier, less agile than before. I noticed that I hadn't that much force in my right side than I used to have, despite that I am right-handed. About End of May I noticed that I had trouble catching my breath. I was out of breath much earlier than I used to be, sometimes feeling the need to desperately suck in as much air as possible.
From mid April to now I am seeing a psychiatrist for my severe anxiety disorder. We tried upping Escitalopram from 10mg to 30mg (max. dose), no effect. So we switched to Sertraline. I can't tolerate more than 100mg due to nausea. No effect though. So due to worsening symptoms (I aspirated garlic oil once and had a choking feeling) my psychiatrist finally agreed that I was neurologically assessed. So last Monday (Jul 29) I was seen by a Neurologist (here in Switzerland called "Facharzt für Neurologie") and, what I absolutely did not expect to hear, he didn't find anything wrong. The report reads:
Assessment and suggestions for the procedure
The detailed anamnesis is already known. The clinical neurological examination reveals no abnormalities, in particular no paresis, no reflex differences, no fasciculations of the limb muscles, no fibrillations of the tongue.
The detailed electrodiagnostics are unremarkable, there are no indications of neuropathy or myopathy or even motor neuron disease. Against the background of the normal findings, the patient is reassured.
Clinical findings
Somatic neurological findings: Finger perimetric no evidence of visual field defect, normal oculomotor and pupullomotor function, normal sensory and motor function in the face, Halmagyi negative on both sides, normal caudal cranial nerves. Arm and leg hold tests normal. No paresis in the individual strength test. Normal muscle tone, regular muscle trophism. Lateral muscle reflexes lively on both sides, no pyramidal tract signs.
NCS (motor / sensitive) was normal. EMG was normal. Muscles tested in EMG:
Right side: M. masseter, M. biceps brachii, M. extensor digitorum, M. gastrocnemius caput mediale, M. tibialis anterior
Left side: M. gastrocnemius caput mediale
Comment on all muscles tested: Normally configured potentials in terms of amplitude level, potential duration and polyphasing rate. No pathological spontaneous activity, no fasciculations.
(Text translated with a machine from German to English, so may not be correct all the time)
I just wanted to give you guys a feedback what can come round in cases like mine. I still have the symptoms though, swallowing feels difficult, alien, "weak" for some reason, and of course there is the aspiration issue. The Neuro recommended to now focus on mental health which I will do, I will check in a Clinic soon for a few weeks. If symptoms persist after that I may be evaluated by an ENT, but at the moment not recommended by him.
Despite my endless fear of ALS, I was so sure I had it, the Neuro doesn't think I have it. I think I will go with this now and do what he and my psychiatrist advised and focus on my mental health.
I highly recommend anyone struggling with debilitating fear of ALS (or anything really), go see a Specialist and find out. It was the hardest thing I ever had to do, to see that doctor and be assessed for I had thought I knew the answer. I didn't. I don't have answers to my symptoms, at least not all of them, but I have some now. The "doubt monster" will always interfere with anxiety patients like me, and it does even now. What if the Neuro didn't test enough muscles, not the correct (bulbar) muscles etc. I must learn to trust I guess.
I thank you guys for your answers you have provided and I wish you all the best what can be.
PS. This thread can be closed after a while, I just wanted to give some insight and hope to others suffering from the same uncertainty.
With respect and love from Switzerland
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