My story so far

Alex_UK_29

New member
Joined
Sep 30, 2020
Messages
2
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Learn about ALS
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00/0000
Country
UK
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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
 

Nikki J

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Mar 22, 2012
Messages
9,389
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PALS
Diagnosis
04/2014
Country
US
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Boston
Well something is wrong with you obviously. You don’t indicate a time frame so it is hard to say if your weakness progression is at all typical. Starting off with the weight loss and then constipation is odd too for ALS. If it is all the same thing ( as opposed to separate problems) I think you are more likely to be looking at something else. Hopefully the neurologist will be sble to figure it out soon. Please let us know
 

lgelb

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Lost a loved one
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I don't see any reason to worry about ALS, but the first thing that popped into my head when reading your story was some kind of malabsorption syndrome, leading to weight loss and ultimately other issues because of longstanding nutritional deficiencies, most often B vitamins. The "weight gain" diet may not be ideal for your circumstances, either. An endocrine issue is another thought. Not sure what labs you've had drawn when.

If the neurology consult or EMG is not revealing, I would go back to your GP and ask to go back a step.

Best,
Laurie
 

Alex_UK_29

New member
Joined
Sep 30, 2020
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
GB
City
Wales
Thank you both for your messages. I am not too sure of timescales myself to be honest, my memory isn't the most accurate. It feels like it has taken me forever to get to this point but that may be because I have been down in mood since all this began.

I have had many different blood tests done but unfortunately I don't have any of the results as the NHS GP practice holds them.
No issues with them as far as I have been told.
I forgot to mention I have developed muscle twitches a lot too. I have one just above the left kneecap as I type this message that has been going on all day and night. They mainly occur on the left hand side in the leg, shoulder, pectoral, latissimus dorsi, abdominal, bicep/inner elbow. My jaw is also quite stiff now as well as the left knee.

I will be arranging an appointment with the neurologist soon so I will update you on what happens.

Do you have any information on what to expect from a first consultation?

Thank you,
Alex
 

Nikki J

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Joined
Mar 22, 2012
Messages
9,389
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Usually a first neuro appointment will consist of a review of your personal medical history and a question about any neurologic diseases in the family They would review your tests of course , perhaps before the visit. They will take a history of your illness. I encourage you to write it down and attempt to put a timeline on it because it is important. Also concrete examples are helpful. My hand is weak is not as descriptive asI can not button a shirt or lift a glass.

then they will examine you after which they should tell you their findings, initial impression and plan. more lab tests could be taken. If an emg is indicated unless prior arrangements happened it will probably be scheduled at another time.

read the important post at the top of the subforum getting a diagnosis. Some practical aspects will be different in the Uk but it still should be helpful. As always your initial question should be what is wrong with me? Not is this ALS.

good luck. Please let us know what happens
 
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