Diagnosed in September

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Francesco

New member
Joined
Aug 30, 2024
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2
Reason
Loved one DX
Diagnosis
08/2024
Country
IT
Hi everyone.
I'm here because my father is 73 years old and was diagnosed with ALS / flail arm in September 2024.
In 2017 he underwent surgery on the shoulder of his right arm because he had damaged tendons which prevented him from making movements with his arm.
Around 2020 / 2021 he begins to have problems with his right arm and shoulder again: pain with increasingly reduced arm movements as time passes.
The first thought was that of a problem concerning the tendons again. He neglected the problem due to fear of a new surgery until, in 2023, his arm was almost immobilized and atrophied.
He visited the orthopedist who told him to have a neurological examination because his right arm was in bad condition.
EMG showed diffuse denervations in the right arm.
He therefore had all the visits and tests at a clinic specialized in ALS and the diagnosis was ALS with onset in the upper limbs, or flail arm syndrom (as the doctor says, only time will tell us which of the two diagnoses is the correct one).
To date my father has completely lost his right arm, but he has no other problems with his other limbs or problems with his tongue and breathing. He took riluzolo and vitamin C
He continues to drive and work like a thirty-year-old, but we all wonder for how long?
I know that when it comes to ALS, the progression and symptoms can be different for everyone, but is there anyone on the forum who has had ALS confined to a single limb for a long time?
Thanks to all and sorry for my not perfect English
 
Hi Francesco, I am sorry to hear about your father.

I was diagnosed with flail arm syndrome in Oct 23 after syptoms started in 2019 in my left shoulder, when I first saw a physio it was misdiagnosed as a rotator cuff issue. By the time I was diagnosed my whole left arm had lost function but I had some finger movement preserved.

I was also told in time,this could turn into ALS should any upper motor neurone involvement happen.Also my official diagnosis letter from my MND clinic (am in the UK) stated diagnosis as flail arm syndrome/PMA phenotype ( due to lower motor neurone involvment only.)

My EMGs during diagnostic process showed disease in my right arm also but it's only been the last 6 to 8 months or so that weakness and atrophy has started, mainly again in the shoulder.

All the best Denise
 
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