Alex_UK_29
New member
- Joined
- Sep 30, 2020
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- GB
- City
- Wales
Hello,
About 1.5 years ago I started losing strength and muscle mass. I went from about 13 stone/182lbs to 9 stone/125lbs. I am 5foot 11" (1.8m) tall. I had always been skinny but strong nonetheless from previously working in construction. However I hadn't been this weight since I was around 10 years old so it was concerning. I am 29yrs old now.
My doctor ran some blood tests but there was nothing to report. My doctor said it must have been caused by stress or something so I just left it at that.
However a few months later I had developed constipation. After using over the counter laxatives for a week or so it persisted so I visited my doctor. Many prescription laxatives later and I could not get my bowels moving. Its like the urge has gone away and it all dries up and blocks the colon. I decided to up my food intake eating all kinds of high fat high calorie food to try and regain some lost weight but that just got blocked and I ended up in the emergency room after not having a bowel movement for 10 days. I was having chest pain and back pain.
An x-ray revealed that my colon was full.
Cut a long story short I was worried that there may be something in my colon that was causing the constipation. Coupled with the weight loss I was experiencing I ended up having a sigmoidoscopy and a CT colonoscopy. Both came back clear.
I was also experiencing chronic acid reflux and had been for many years so I also had an endoscopy. Only some esophageal acid wear was found. Nothing sinister so I was relieved. I ended up being prescribed stool softener drinks daily to assist with bowel movements. My doc put it down to a lazy bowel and said that anyone can develop it.
I kept the calorie intake high as I was still very skinny and wanted to get some weight back on.
Then the weakness started off in my left foot/leg and left hand. I found myself kicking the floor while walking and ruined about 3 pairs of shoes due to scuffing the toe on the ground. I found myself dropping stuff while doing the washing up, struggling to hold up a pan when moving food to the plate etc. My wrist just falls downwards and my grip slips. My legs started getting weak and shaky and jerky under my bodyweight. Especially when bent at the knee while walking down the stairs. Driving became more difficult as my leg would not hold the pedal down for long anymore and would tire out easily (manual clutch) I started to get exhausted really easily while taking my dog for a 30 minute walk.
Walking around at work (office job) became difficult especially up the flights of stairs my calves would get really stiff and tired.
My left arm and hand from the shoulder down has gotten smaller and my left leg too. I find myself sleeping a lot after doing things as it seems everything physical I attempt is a shaky jerky struggle that leaves me exhausted.
I often kick things with my left foot when walking around obstacles because yhe foot doesn't go where I want it to or I walk into a doorframe if its on my left hand side as I walk through.
I have had an MRI of the head and spine to rule out MS. No lesions found in the brain or spinal cord.
More recently I have noticed that my breathing is more shallow. When I first wake up I take a few deep breaths and it feels like my diaphragm on the left is being forced downwards.
I have also noticed that my voice is struggling and gets higher pitched and quieter throughout the day. As well as a bit croaky or shaky and feels tight in the neck area. I have also noticed the epiglottis is leaning to the right side of my throat. Not sure what relevance that is though.
I am now due to have another appointment with a neurologist which I am hoping will lead to an EMG/NCS and finally some answers.
Major respect to members of this forum for being absolute warriors during their struggle.
I am not posting this message to get a diagnosis or sympathy or anything. Unfortunately my situation has caused me to learn more about the illness and the many different types that exist. I'm just wondering if anyone can relate to my story? I have so much admiration for the members of this forum. Your resilience is amazing.
Thank you for reading,
Alex
About 1.5 years ago I started losing strength and muscle mass. I went from about 13 stone/182lbs to 9 stone/125lbs. I am 5foot 11" (1.8m) tall. I had always been skinny but strong nonetheless from previously working in construction. However I hadn't been this weight since I was around 10 years old so it was concerning. I am 29yrs old now.
My doctor ran some blood tests but there was nothing to report. My doctor said it must have been caused by stress or something so I just left it at that.
However a few months later I had developed constipation. After using over the counter laxatives for a week or so it persisted so I visited my doctor. Many prescription laxatives later and I could not get my bowels moving. Its like the urge has gone away and it all dries up and blocks the colon. I decided to up my food intake eating all kinds of high fat high calorie food to try and regain some lost weight but that just got blocked and I ended up in the emergency room after not having a bowel movement for 10 days. I was having chest pain and back pain.
An x-ray revealed that my colon was full.
Cut a long story short I was worried that there may be something in my colon that was causing the constipation. Coupled with the weight loss I was experiencing I ended up having a sigmoidoscopy and a CT colonoscopy. Both came back clear.
I was also experiencing chronic acid reflux and had been for many years so I also had an endoscopy. Only some esophageal acid wear was found. Nothing sinister so I was relieved. I ended up being prescribed stool softener drinks daily to assist with bowel movements. My doc put it down to a lazy bowel and said that anyone can develop it.
I kept the calorie intake high as I was still very skinny and wanted to get some weight back on.
Then the weakness started off in my left foot/leg and left hand. I found myself kicking the floor while walking and ruined about 3 pairs of shoes due to scuffing the toe on the ground. I found myself dropping stuff while doing the washing up, struggling to hold up a pan when moving food to the plate etc. My wrist just falls downwards and my grip slips. My legs started getting weak and shaky and jerky under my bodyweight. Especially when bent at the knee while walking down the stairs. Driving became more difficult as my leg would not hold the pedal down for long anymore and would tire out easily (manual clutch) I started to get exhausted really easily while taking my dog for a 30 minute walk.
Walking around at work (office job) became difficult especially up the flights of stairs my calves would get really stiff and tired.
My left arm and hand from the shoulder down has gotten smaller and my left leg too. I find myself sleeping a lot after doing things as it seems everything physical I attempt is a shaky jerky struggle that leaves me exhausted.
I often kick things with my left foot when walking around obstacles because yhe foot doesn't go where I want it to or I walk into a doorframe if its on my left hand side as I walk through.
I have had an MRI of the head and spine to rule out MS. No lesions found in the brain or spinal cord.
More recently I have noticed that my breathing is more shallow. When I first wake up I take a few deep breaths and it feels like my diaphragm on the left is being forced downwards.
I have also noticed that my voice is struggling and gets higher pitched and quieter throughout the day. As well as a bit croaky or shaky and feels tight in the neck area. I have also noticed the epiglottis is leaning to the right side of my throat. Not sure what relevance that is though.
I am now due to have another appointment with a neurologist which I am hoping will lead to an EMG/NCS and finally some answers.
Major respect to members of this forum for being absolute warriors during their struggle.
I am not posting this message to get a diagnosis or sympathy or anything. Unfortunately my situation has caused me to learn more about the illness and the many different types that exist. I'm just wondering if anyone can relate to my story? I have so much admiration for the members of this forum. Your resilience is amazing.
Thank you for reading,
Alex