WorriedBelgianGuy
New member
- Joined
- Jun 29, 2017
- Messages
- 7
- Reason
- Learn about ALS
- Country
- BE
- State
- -
- City
- Bruges
Hi all,
first of all English is not my native language, so forgive my English. I feel sorry for all people who got diagnosed with the terrible disease called ALS, I really feel it with you all.
I have read the stickies, however it is not 100% clear for some cases for me.
That's why I am posting here.
I'm an Belgian guy with the age of 29 years old.
Let me tell the story in short, well actually I try to make it short.
At the beginning of May I experienced a bang (sound) in my ear following a brain zap. I was worried about a tumor or something so my anxiety began here.
Two weeks later I had heavy and stiff legs (both) I hardly could use. I could bike but getting up stairs was very hard and it felt like it was exhausted. But this disappeared within one week and till now I haven't got that sensation anymore.
After my legs went fine I got a MRI scan and it was all clear. So no tumor/MS.
But then the fasisculations started right the day after, it started on my calves on the first day then widespread on my whole body. Lips, cheeks, jaws, throat, arms, hands, legs, calves, feet, just everywhere.
I know widespread fasisculations is not a sign of ALS but in some rare cases it have happened from what I've read. They do not look like worms, but it is like small creatures under the skin (as in or under muscles) with a rope attached to the skin/muscle and just pulling it. Then you can see the muscle/skin just pulling down. I believe they are called contractions. Mostly it is 1 to 10 contractions per time.
At that moment I had it every second on different places. At the moment of the widespread fasisculations I had no experience of weakness. Another sensation was 'convulsions', where my feet sometimes went up and down. I have no control about it, it just happens. This happened a couple times per day.
I went to my family doctor and he said it was magnesium deficiency. I took the pills, after one week it persisted so did not help.
But now, after this I began worrying me about ALS:
I had a huge cramp in my thumb palm which completely moved my thumb up and down for a few seconds. I shaked my hands quickly and it disappeared. Twitching everywhere continues.
I went back to my family doctor and told the pills did not help, he refered me to a neurologist and ordered a blood test. The bloodtest came back fine (tested on "everything" he said).
On the first appointment of my neurologist I had only the strength test of my hands, EEG-test and reflex tests. They were normal and he was listening to my story I described above.
He was thinking of epilepsy so I got medicines Rivotril and Lyrica and got a new appointment two weeks later. I was completely surprised then.
Two weeks later the contractions/fasisculations has a bit calmed down (as in less fasisculations) BUT my thumb and thumb palm started to feel weird. It felt like it got weakened. However I could pull heavy items without an issue until one week ago (I think?).
I lifted my bike to switch trains, it went fine but after putting down my bike (lifting lasted 3 minutes or so) my right thumb was shaking uncontrollable. This persisted few hours until it went away. At that point I was more scared of ALS. Yes, I played Dr. Google which let me anxiety strike trough the roof.
On the second appointment with my neurologist (the head neurologist & the same neurologist) I told the story about my right hand issues he was not worried or something. He said it was not ALS (without a single of test, just based on my story) and he said it was probably not epilepsy but all anxiety and stress related (however I had no stress except stress/anxiety about my health).
I asked if it was BFS and showed him the wikipedia page, he said that is the possible cause indeed.
Had no full clinical test, no EMG yet. He also ruled out MS due to my MRI head scan which was fine.
I simply can not understand how he can rule out ALS just based on my story?
Now a couple days later after the appointment my right hand still feels weird, it's for about 2 weeks now. I know ALS is not about feeling, but about failing but it should progress to failing, right? There should be a starting point when It will start to fail. That's where my question comes in.
Now when I try to screw the button on the bottle water, which goes fine, I can screw it pretty hard but then after that (not while doing it) my thumb twitches/moves/is shaking. Almost always this happens, not everytime. This looks like weakness or am I wrong? Can this progress into clinical weakness or is it completely different story?
For the rest I sometimes had small swallowing problems, very sometimes I have to swallow twice.
Yesterday I had a feeling of pleghm/slime in my throat which just hung there, I could remove it but it always came back in after an amount of time. Now today I don't really have it. Maybe post nasal drip. Sometimes I feel wet mouth corners, but when swiping out sometimes there is no saliva. Sometimes there is.
Twitching has been less now, just once per hour or half hour or something now. I think the medicines might calm it down.
I hope I'm not wasting your time, I know many people will ask questions about your experiences that's why I waited to post this until I noticed the screwing-twitching thumb I could not handle my anxiety anymore and decided to post it here. I know your time is very valued, and typing is hard for some ALS patients. I really feel for you all. I hope you understand me.
Should I not worry about ALS and is it all really anxiety/BFS related or should I ask the neurologist for more tests? Is the neurologist right or are there doubts about his diagnosis?
Much appreciated and thanks for your time.
first of all English is not my native language, so forgive my English. I feel sorry for all people who got diagnosed with the terrible disease called ALS, I really feel it with you all.
I have read the stickies, however it is not 100% clear for some cases for me.
That's why I am posting here.
I'm an Belgian guy with the age of 29 years old.
Let me tell the story in short, well actually I try to make it short.
At the beginning of May I experienced a bang (sound) in my ear following a brain zap. I was worried about a tumor or something so my anxiety began here.
Two weeks later I had heavy and stiff legs (both) I hardly could use. I could bike but getting up stairs was very hard and it felt like it was exhausted. But this disappeared within one week and till now I haven't got that sensation anymore.
After my legs went fine I got a MRI scan and it was all clear. So no tumor/MS.
But then the fasisculations started right the day after, it started on my calves on the first day then widespread on my whole body. Lips, cheeks, jaws, throat, arms, hands, legs, calves, feet, just everywhere.
I know widespread fasisculations is not a sign of ALS but in some rare cases it have happened from what I've read. They do not look like worms, but it is like small creatures under the skin (as in or under muscles) with a rope attached to the skin/muscle and just pulling it. Then you can see the muscle/skin just pulling down. I believe they are called contractions. Mostly it is 1 to 10 contractions per time.
At that moment I had it every second on different places. At the moment of the widespread fasisculations I had no experience of weakness. Another sensation was 'convulsions', where my feet sometimes went up and down. I have no control about it, it just happens. This happened a couple times per day.
I went to my family doctor and he said it was magnesium deficiency. I took the pills, after one week it persisted so did not help.
But now, after this I began worrying me about ALS:
I had a huge cramp in my thumb palm which completely moved my thumb up and down for a few seconds. I shaked my hands quickly and it disappeared. Twitching everywhere continues.
I went back to my family doctor and told the pills did not help, he refered me to a neurologist and ordered a blood test. The bloodtest came back fine (tested on "everything" he said).
On the first appointment of my neurologist I had only the strength test of my hands, EEG-test and reflex tests. They were normal and he was listening to my story I described above.
He was thinking of epilepsy so I got medicines Rivotril and Lyrica and got a new appointment two weeks later. I was completely surprised then.
Two weeks later the contractions/fasisculations has a bit calmed down (as in less fasisculations) BUT my thumb and thumb palm started to feel weird. It felt like it got weakened. However I could pull heavy items without an issue until one week ago (I think?).
I lifted my bike to switch trains, it went fine but after putting down my bike (lifting lasted 3 minutes or so) my right thumb was shaking uncontrollable. This persisted few hours until it went away. At that point I was more scared of ALS. Yes, I played Dr. Google which let me anxiety strike trough the roof.
On the second appointment with my neurologist (the head neurologist & the same neurologist) I told the story about my right hand issues he was not worried or something. He said it was not ALS (without a single of test, just based on my story) and he said it was probably not epilepsy but all anxiety and stress related (however I had no stress except stress/anxiety about my health).
I asked if it was BFS and showed him the wikipedia page, he said that is the possible cause indeed.
Had no full clinical test, no EMG yet. He also ruled out MS due to my MRI head scan which was fine.
I simply can not understand how he can rule out ALS just based on my story?
Now a couple days later after the appointment my right hand still feels weird, it's for about 2 weeks now. I know ALS is not about feeling, but about failing but it should progress to failing, right? There should be a starting point when It will start to fail. That's where my question comes in.
Now when I try to screw the button on the bottle water, which goes fine, I can screw it pretty hard but then after that (not while doing it) my thumb twitches/moves/is shaking. Almost always this happens, not everytime. This looks like weakness or am I wrong? Can this progress into clinical weakness or is it completely different story?
For the rest I sometimes had small swallowing problems, very sometimes I have to swallow twice.
Yesterday I had a feeling of pleghm/slime in my throat which just hung there, I could remove it but it always came back in after an amount of time. Now today I don't really have it. Maybe post nasal drip. Sometimes I feel wet mouth corners, but when swiping out sometimes there is no saliva. Sometimes there is.
Twitching has been less now, just once per hour or half hour or something now. I think the medicines might calm it down.
I hope I'm not wasting your time, I know many people will ask questions about your experiences that's why I waited to post this until I noticed the screwing-twitching thumb I could not handle my anxiety anymore and decided to post it here. I know your time is very valued, and typing is hard for some ALS patients. I really feel for you all. I hope you understand me.
Should I not worry about ALS and is it all really anxiety/BFS related or should I ask the neurologist for more tests? Is the neurologist right or are there doubts about his diagnosis?
Much appreciated and thanks for your time.
