Bailey360
New member
- Joined
- Jul 31, 2017
- Messages
- 2
- Reason
- Learn about ALS
- Country
- Uk
- State
- Essex
- City
- Basildon
Hello everyone, introducing myself here and seeing if anyone here can offer some help. I'm in desperate need. I'm a 34 yr Male.
I apologise in advance for the long post.
Things started around 3 weeks ago while I was away on holiday. I felt that my right hand was strange, and unable to manouvre my knife around in my hand properly. Just felt odd.
I also had a few jerks in the sole of my right foot whilst sleeping.
The panic set in, but at that time I had no idea what ALS was. I was walking around with a foggy head and a sight headache and walking slightly unbalanced. My wife it was viral or anxiety. I thought it was a brain tumour.
As soon as I returned home, I began reading up on ALS. No longer was I panicked. I was now terrified.
Sheer terror. I have a 3 year old daughter.
I went to see a private GP who booked an immediate brain and spine image. GP said reflexes were perfectly normal except could not elicit a palmar reflex on either foot which she did not seem worried about.
The following day, the hospital called to say the brain and spine imaging were normal. This news sent me into a major panic and a full nervous breakdown. As I knew this points more towards ALS than MS or similar.
Stress became too much for me.
I was admitted to a psychiatric ward for a major episode of what they say I psychosis. I saw it as a nervous breakdown. Same thing? I'm not sure.
My thinking and reasoning is still not 100% as I write this.
My symptoms before being admitted to psychiatric ward: (1 week ago)
- fasciculations and twitches.
- Cramps in sole of feet.
- Right hand feeling awkward.
- tendons seem to be more visible at certain times.
- pronounciation of words feels weird (no one else has noticed
- wet feeling in feet (although dry)
- body tremors and chattering teeth like in Antarctic.
4th finger in right hand feels like tendon stretched.
Whilst in the psychiatric ward I could not speak or function in any way. Just blank staring and mumbling of words The most frightening thing thing I've ever experienced (so far).
I'm back at home now under supervision and have a further neuro exam on Wednesday.
My new symptoms since returning home are:
- Body feels heavy on legs when rising and sitting.
Not weak, but heavy. Difficult to explain.
- intermittent off balance.
- food getting stuck half way down. Even regurgitated liquid though my nose.
- swallow feels like it's getting weaker.
- calfs seem to be disappearing equally on both sides. I cannot see any asymmetrical wastage.
- I kind of 'pulling' down sensation in roof of mouth and nose area.
- a one side swallowing feeling.
- trembling of different parts of body when holding in he air that I'm sure where not there before.
- gag reflex has gone if I put my fingers down throat (if I try hard I can elicit a gag reflex, but it seems less excitable)
- fingers flexing and straightening in Jerky motion.
There are no actions so far that have been 'impossible' to do. By my whole body feels weak and right hand feels awkward with small objects. Not all the time however. More when I concentrate on it.
My whole family and all the GP's believe that I was heading for a breakdown and I have become obsessed with ALS during my moments of psychosis. The more I try to explain my situation, the more they push back with the 'you're unwell, your brain is powerful and is playing tricks on you. You have not got ALS.
Even the psychiatric team are not even open to the possibility that the ALS has caused my cognitive breakdown. They see it the other way around.
The more I talk about ALS andI check myself the more it seems like I'm psychotic and think I have this rare disease. The more so push my view, the more they push back.
I really need help and guidance. Please.
I'm so scared that I'm going to wake in the night and not be able to swallow or speak.
I feel I am ready to accept the truth either way, but my family and medical experts are definitely going down the wrong path with all this and no matter how hard I try to explain, they just look at me in pity... as someone experiencing psychotic episodes.
I know that ALS can bring on ritualistic mannerisms , and in my case I've chosen to become obsessed with the disease itself. Constant self checking and googling.
So the loop goes around and around.
I'm physically and mentally at the limit of what the human brain can take at the moment.
My wife has even turned her back on me because she believes this is all me making a fuss and I need to snap out of it. But I just cannot do it.
Please can some one offer some words of wisdom or guidance.
No one in my support circle knows how to help me as that are themselves in denial. Even all the medical people I've seen. Are not treating or assessing the true problem. ALS.
There is no way anxiety or psychosis can manifest the symptoms I'm having.
I hope everyone else is right and I'm he only one that is wrong.
Help desperately needed.
X
I apologise in advance for the long post.
Things started around 3 weeks ago while I was away on holiday. I felt that my right hand was strange, and unable to manouvre my knife around in my hand properly. Just felt odd.
I also had a few jerks in the sole of my right foot whilst sleeping.
The panic set in, but at that time I had no idea what ALS was. I was walking around with a foggy head and a sight headache and walking slightly unbalanced. My wife it was viral or anxiety. I thought it was a brain tumour.
As soon as I returned home, I began reading up on ALS. No longer was I panicked. I was now terrified.
Sheer terror. I have a 3 year old daughter.
I went to see a private GP who booked an immediate brain and spine image. GP said reflexes were perfectly normal except could not elicit a palmar reflex on either foot which she did not seem worried about.
The following day, the hospital called to say the brain and spine imaging were normal. This news sent me into a major panic and a full nervous breakdown. As I knew this points more towards ALS than MS or similar.
Stress became too much for me.
I was admitted to a psychiatric ward for a major episode of what they say I psychosis. I saw it as a nervous breakdown. Same thing? I'm not sure.
My thinking and reasoning is still not 100% as I write this.
My symptoms before being admitted to psychiatric ward: (1 week ago)
- fasciculations and twitches.
- Cramps in sole of feet.
- Right hand feeling awkward.
- tendons seem to be more visible at certain times.
- pronounciation of words feels weird (no one else has noticed
- wet feeling in feet (although dry)
- body tremors and chattering teeth like in Antarctic.
4th finger in right hand feels like tendon stretched.
Whilst in the psychiatric ward I could not speak or function in any way. Just blank staring and mumbling of words The most frightening thing thing I've ever experienced (so far).
I'm back at home now under supervision and have a further neuro exam on Wednesday.
My new symptoms since returning home are:
- Body feels heavy on legs when rising and sitting.
Not weak, but heavy. Difficult to explain.
- intermittent off balance.
- food getting stuck half way down. Even regurgitated liquid though my nose.
- swallow feels like it's getting weaker.
- calfs seem to be disappearing equally on both sides. I cannot see any asymmetrical wastage.
- I kind of 'pulling' down sensation in roof of mouth and nose area.
- a one side swallowing feeling.
- trembling of different parts of body when holding in he air that I'm sure where not there before.
- gag reflex has gone if I put my fingers down throat (if I try hard I can elicit a gag reflex, but it seems less excitable)
- fingers flexing and straightening in Jerky motion.
There are no actions so far that have been 'impossible' to do. By my whole body feels weak and right hand feels awkward with small objects. Not all the time however. More when I concentrate on it.
My whole family and all the GP's believe that I was heading for a breakdown and I have become obsessed with ALS during my moments of psychosis. The more I try to explain my situation, the more they push back with the 'you're unwell, your brain is powerful and is playing tricks on you. You have not got ALS.
Even the psychiatric team are not even open to the possibility that the ALS has caused my cognitive breakdown. They see it the other way around.
The more I talk about ALS andI check myself the more it seems like I'm psychotic and think I have this rare disease. The more so push my view, the more they push back.
I really need help and guidance. Please.
I'm so scared that I'm going to wake in the night and not be able to swallow or speak.
I feel I am ready to accept the truth either way, but my family and medical experts are definitely going down the wrong path with all this and no matter how hard I try to explain, they just look at me in pity... as someone experiencing psychotic episodes.
I know that ALS can bring on ritualistic mannerisms , and in my case I've chosen to become obsessed with the disease itself. Constant self checking and googling.
So the loop goes around and around.
I'm physically and mentally at the limit of what the human brain can take at the moment.
My wife has even turned her back on me because she believes this is all me making a fuss and I need to snap out of it. But I just cannot do it.
Please can some one offer some words of wisdom or guidance.
No one in my support circle knows how to help me as that are themselves in denial. Even all the medical people I've seen. Are not treating or assessing the true problem. ALS.
There is no way anxiety or psychosis can manifest the symptoms I'm having.
I hope everyone else is right and I'm he only one that is wrong.
Help desperately needed.
X
