banjanti
Member
- Joined
- Mar 6, 2016
- Messages
- 29
- Reason
- Friend was DX
- Country
- PL
- State
- mazowieckie
- City
- Warsaw
Welcome,
I've been on the forum here some time ago asking about my case. Until now I'm pretty much confident I have Benign Fasciculation Syndrome, Idiopathic Fasciculations, you name it. (I never self-diagnosed ALS though, it was a concern of my neurologist, as I had spontaneous activity, namely PSW and fibrillations on EMG) This post is not about me. I'm completely in peace and not looking for any ALS symptoms, but all the research sticked to back of my head and I've met a person with clear Motor Neuron Disease but pure accident.
I've moved back to my home country - Poland. Poland doesn't have dedicated ALS centers, only few neuromuscular neurologist with ALS speciality.
The person I'm talking about first developed weakness in arms 4 years ago, EMG is pretty conclusive in that area with typical pattern of active and chronic denervation and polyphasic MUAP. All other areas however were very inconclusive, bulbar is clean from a start to current date, both emg and symptomatic wise. Weakness in arms have progressed, there is clear atrophy, walking is impaired but proximally, there is not foot drop. One of the best Polish ALS neurologist confirmed lack of UMN involvement and sustain MND diagnosis. He said it may as well be progressive over decades and advised to check for SMBA. He rejects MMN on basis that there is no conduction block and he won't recommend trying IGIV, even where there is clear evidence on NCV on all motor nerves conduction change
Clinically weakness and atrophy is obvious, but progression rate is amazingly slow and lack of UPM puzzles as all, as LMN syndromes are described as rather rapidly progressing and going into full blaze ALS sooner or later
If you have any suggestions that can help my friend please advice, I'm writing in his name as he doesn't speak English
Best regards
I've been on the forum here some time ago asking about my case. Until now I'm pretty much confident I have Benign Fasciculation Syndrome, Idiopathic Fasciculations, you name it. (I never self-diagnosed ALS though, it was a concern of my neurologist, as I had spontaneous activity, namely PSW and fibrillations on EMG) This post is not about me. I'm completely in peace and not looking for any ALS symptoms, but all the research sticked to back of my head and I've met a person with clear Motor Neuron Disease but pure accident.
I've moved back to my home country - Poland. Poland doesn't have dedicated ALS centers, only few neuromuscular neurologist with ALS speciality.
The person I'm talking about first developed weakness in arms 4 years ago, EMG is pretty conclusive in that area with typical pattern of active and chronic denervation and polyphasic MUAP. All other areas however were very inconclusive, bulbar is clean from a start to current date, both emg and symptomatic wise. Weakness in arms have progressed, there is clear atrophy, walking is impaired but proximally, there is not foot drop. One of the best Polish ALS neurologist confirmed lack of UMN involvement and sustain MND diagnosis. He said it may as well be progressive over decades and advised to check for SMBA. He rejects MMN on basis that there is no conduction block and he won't recommend trying IGIV, even where there is clear evidence on NCV on all motor nerves conduction change
Clinically weakness and atrophy is obvious, but progression rate is amazingly slow and lack of UPM puzzles as all, as LMN syndromes are described as rather rapidly progressing and going into full blaze ALS sooner or later
If you have any suggestions that can help my friend please advice, I'm writing in his name as he doesn't speak English
Best regards
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