Grieg
Member
- Joined
- Sep 19, 2016
- Messages
- 13
- Reason
- PALS
- Diagnosis
- 01/2018
- Country
- NO
- State
- ST
- City
- Norway
So wasn't sure wether to post back here on this forum but decided I would in the end. I was diagnosed with ALS about 2 months ago after two years of hell battling doctors, being sent through psychiatric system, multiple EMGs etc. I have pretty much known for the last 16 months that I had ALS after I noticed the weakness, twitching and atrophy (in that order) which spread to pretty much all parts of my body over time combined with the fact that the doctors were unable to find an alternative cause (they didn't diagnose me back then as they ignored the atrophy and the EMG weren't Definitive enough until recently)..
Anyway I am very tired at the moment - the fatigue is overwhelming, my breathing problems started about 18 months ago and is pretty poor now but still breathing without assistance. Swallowing also affected but no PEG yet. can still walk very short distances but can feel the difference day to day regarding my strength and energy. I have atrophy throughout the body (legs, feet, buttocks, split hand, hands, fingers, upper body, neck, upper arms, face).
I probably had an atypical onset (abdominal/thorax) but I am here on the forum just to say that I am feeling first hand what an impact this disease has on the body and if there are any questions or anything I can help with I will try to do so. I have managed to build up quite a lot of knowledge on ALS and I am also 99.9% sure of what caused it for me.
I am only in my thirties so this is all pretty devastating. I want to thank those on this forum that have provided a lot of support for those with ALS.
Anyway I am very tired at the moment - the fatigue is overwhelming, my breathing problems started about 18 months ago and is pretty poor now but still breathing without assistance. Swallowing also affected but no PEG yet. can still walk very short distances but can feel the difference day to day regarding my strength and energy. I have atrophy throughout the body (legs, feet, buttocks, split hand, hands, fingers, upper body, neck, upper arms, face).
I probably had an atypical onset (abdominal/thorax) but I am here on the forum just to say that I am feeling first hand what an impact this disease has on the body and if there are any questions or anything I can help with I will try to do so. I have managed to build up quite a lot of knowledge on ALS and I am also 99.9% sure of what caused it for me.
I am only in my thirties so this is all pretty devastating. I want to thank those on this forum that have provided a lot of support for those with ALS.