Kapten_Ragnar
New member
- Joined
- Feb 19, 2015
- Messages
- 8
- Reason
- Learn about ALS
- Country
- SE
- State
- Sweden
- City
- Västra Götaland
Hello PALS, CALS and lurkers !
First i want to apologize for another thread, made one a month ago when i was worried and depressed becuase my condition worsened alot on short time but i feel much better metally due to some reflection over certain things.
I'm not here again to make you tell me i have ALS, just want to ask some questions about symptoms. I will reapet my history of symptoms quick for those who didn't read my previous thread and make a small update since then.
4 years ago = first neurological symptom - Sleep paralysis/ Numbness while waking up back of my head (slept on back often), Waking up by nonexistant sound like doorslams/dog barking/footsteps/bell ringing etc. Extreme sound sensitivity ( dissapeared after a week ), Tiredness.
2 years ago = Most old symptoms continued, numbness in muscles ( around the body) usual when lay down in bed. waking up during nights ( due to lack of breath), groggy mornings. Vibrating sensation entire body ( from within).
1,5 years ago = Thinning wrists,fingers and toes. joint pain in fingers/hand,sore muscles, muscle twitching, Jaw cracking (while eating )
1 year ago = muscle cramps/spasm, continued weakness. continued thinning feet, Burning sensations(skin,muscles)
1-2 months ago = Upper/middle backpain, cracking joints (due to muscle loss entire body), Muscle atrophy (entire body includes Throat/Chin/cheek/jaw/tongue), problem Swallowing water/saliva, cant barely open my mouth entirely due to jaw weakness.
Appointment update = Since last thread i have seen a general doctor who did another physical exam, He checked my reflexes Feet/legs/arms/hand, Nothing happen when he hammered hands/feet/arms, No sign of bibinski (or what it calls), my legs reacted a little bit but flying up ( they were more or less symmetrical ).
My Neurologist refferal got rejected becuase there is no super obvious wrong with me ( read notes from my General doctor).
Good thing i probably will get a MRI on brain soon, Waiting for my appointment time. I will also try sending self referal to Neuro musclar specialist in Gothenburg instead going going through general doctors.
Now to my questions i wanted to ask you....
Have you had this complicated set of symptoms years before diagnosis? Or was the first signs you reflected over the major symptoms like Weakness/atrophy etc...?
I get a strange teribble sensation back of my head sometimes (feels like mix of cramp/headache/very mild pain) usual when laying down or when my anxiesty/depression comes now and then. It also feels like it goes down the neck and upper back(where my pain is) It is really horrible, Have you experienced something similliar?
I apperciate the time you take to read and answer ( sorry for wall of text ).
Robin Ragnarsson.
First i want to apologize for another thread, made one a month ago when i was worried and depressed becuase my condition worsened alot on short time but i feel much better metally due to some reflection over certain things.
I'm not here again to make you tell me i have ALS, just want to ask some questions about symptoms. I will reapet my history of symptoms quick for those who didn't read my previous thread and make a small update since then.
4 years ago = first neurological symptom - Sleep paralysis/ Numbness while waking up back of my head (slept on back often), Waking up by nonexistant sound like doorslams/dog barking/footsteps/bell ringing etc. Extreme sound sensitivity ( dissapeared after a week ), Tiredness.
2 years ago = Most old symptoms continued, numbness in muscles ( around the body) usual when lay down in bed. waking up during nights ( due to lack of breath), groggy mornings. Vibrating sensation entire body ( from within).
1,5 years ago = Thinning wrists,fingers and toes. joint pain in fingers/hand,sore muscles, muscle twitching, Jaw cracking (while eating )
1 year ago = muscle cramps/spasm, continued weakness. continued thinning feet, Burning sensations(skin,muscles)
1-2 months ago = Upper/middle backpain, cracking joints (due to muscle loss entire body), Muscle atrophy (entire body includes Throat/Chin/cheek/jaw/tongue), problem Swallowing water/saliva, cant barely open my mouth entirely due to jaw weakness.
Appointment update = Since last thread i have seen a general doctor who did another physical exam, He checked my reflexes Feet/legs/arms/hand, Nothing happen when he hammered hands/feet/arms, No sign of bibinski (or what it calls), my legs reacted a little bit but flying up ( they were more or less symmetrical ).
My Neurologist refferal got rejected becuase there is no super obvious wrong with me ( read notes from my General doctor).
Good thing i probably will get a MRI on brain soon, Waiting for my appointment time. I will also try sending self referal to Neuro musclar specialist in Gothenburg instead going going through general doctors.
Now to my questions i wanted to ask you....
Have you had this complicated set of symptoms years before diagnosis? Or was the first signs you reflected over the major symptoms like Weakness/atrophy etc...?
I get a strange teribble sensation back of my head sometimes (feels like mix of cramp/headache/very mild pain) usual when laying down or when my anxiesty/depression comes now and then. It also feels like it goes down the neck and upper back(where my pain is) It is really horrible, Have you experienced something similliar?
I apperciate the time you take to read and answer ( sorry for wall of text ).
Robin Ragnarsson.