Good and bad days

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Mommarowl

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Mar 30, 2023
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Learn about ALS
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UK
Hi last March I’ve had a range of weird and wonderful symptoms

Fatigue, muscle weakness, coordination problems, brain fog, swallowing problems that come and go, breathlessness when I do things, muscle spasms, muscle twitches my leg gives way balance probs.lose grip of things

I had a brain mri in august that came back clear

The gp then said must be long covid so I have been attending long covid clinic and have improved my balance somewhat tho still fall

Anyways the clinic said they believe it’s more than long covid and to go back to gp

I went back to gp and she wants an urgent referral to neurologist. Upon reading her referral letter

She noticed , my twitches, abdominal fasciculations, my hand shaking. Slight assumtreical face, my tongue deviated to right, she believes I have muscle wasting to both legs . Her letter states she is concerned I have motor neuron disease.

However I feel if it was something as serious as that I’d feel worse. I wouldn’t have days where I have less spasms and my leg gives way less ? Or is it common for this to be the case ?

I was looking at my tongue yesterday as I was curious to see what she means about deviating to one side and I noticed what I believe to be tongue fasciculations. Several times since they have been there when I’ve checked too. But not every time .

Some times it feels like my leg is heavy, I limp and drag it

Last year it was just my left that felt weak now my right leg and arm are weaker . My left leg is dragged and my right leg gives up,
 
You need to get these symptoms checked out more. Please do so because IF it is ALS or another mnd you can begin to reach out to your local organizations for the assistance you may need in the future.

Please don't wait. 💜
 
My GP said I had a trapped peroneal nerve when I started to fall over my right foot and sent me for physiotherapy. A medical college said I should get an EMG and spine MRI done so I did these. MRI was negative for trapped nerve but EMG raised the red flags for MND and now I have confirmed ALS diagnosis, but it is very slow, fortunately. I've only lost 2 points on the ALSFRS-R score since I first started tripping over a year ago.
Every case of ALS is different it seems, but the EMG should should indicate yes or no. I was in denial for several weeks after the first diagnosis.The sooner you know the better if it is ALS - there are some really exciting clinical trials - I am on Lighthouse II since January and I have felt some positive things (less fatigue, right toes moving more) while at the same time getting a bit weaker in some of my big muscles. Hoping these will start responding to the drug soon.
My fasciculations come and go, weakness gets worse if I am tired and emotional, fatigue is obviously dependent on having a good night's sleep. I'm on melatonin which seems to help my sleep and is also proposed as a potential therapeutic for ALS with some good early data. Hope you get some answers soon. Good luck
 
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