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dadej

New member
Joined
Jun 6, 2016
Messages
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Reason
Loved one DX
Diagnosis
01/2014
Country
IT
State
Rome
Hi, first of all I want to say a big thank you to all the people that post on this forum. I've spent quite a long time here lately, and reading your stories of compassion and courage was a big help to me.

I hope this is the right place to open this topic. If not, feel free to move it.
A member of my family was diagnosed with MND in early 2014. The onset was around summer 2010, when he was in his mid fifties, and noticed he couldn't move a finger anymore.
In these 6 years he lost a great deal of strength in both his arms, but he can still perform tasks like pulling up the blinds, or holding the shopping bag.
Apart from muscle wasting and weakness in the arms, and impossibility in moving certain fingers, there is no evidence of other signs of the disease: he can still speak fluently, he can eat normally and his legs work well. I can't see any emotional lability, fasciculation, spasticity or such.
Last EMG revealed damage to the lower motor neuron, but the upper one is still fine: for this reason, I think, the diagnose is still generic MND, and not ALS. On the other side, at least a doctor prescribed riluzole to him: as far as I know, riluzole is used only in ALS.

So, in the end we're a bit confused. Maybe there is no point in guessing what kind of MND we're facing, because there is no cure for any of them, and we have to accept what will come. Nevertheless the opinion of people that are more familiar than us with these kind of situations would be a great help to us.

Thanks in advance,
dade
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
312
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
Dade,

My husband has been diagnosed with what his neuromuscular specialist calls "a slow-progressing variant" of ALS. Perhaps he is calling it ALS because there are ramifications here in the US regarding getting social security disability payments. His EMG also shows LMN symptoms but so far no UMN symptoms in the physical testing. We tried riluzole but it made my husband feel more tired. Others here know more about the drug than I do, but my understanding is that riluzole affects the glutamate which potentially damages neurons. There is a variant of MND called progressive muscular atrophy, which affects lower motor neurons only, and I understand riluzole is typically prescribed, so perhaps that is what both your family member and my husband have. We are now trying methylcobalamin injections. I am hoping this helps with the fatigue as well as slowing progression.

V
 

dadej

New member
Joined
Jun 6, 2016
Messages
2
Reason
Loved one DX
Diagnosis
01/2014
Country
IT
State
Rome
Hi vlstra, thank you for your reply!
I'm so sorry for your husband, it seems indeed that both him and my relative are suffering of this progressive muscular atrophy. May I ask you when the onset was in your case, and how is the disease progressing?
I didn't know that riluzole may be prescribed even without upper motor neuron damage, this explains a few things.
I'll give a look to methylcobalamin injections as well, it seems promising, thank you again for the suggestion.

dade
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
312
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
Dade, my husband noticed some weakness in his left hand about 2 years ago, nothing very dramatic. He worked with his hands, so it was very noticeable to him where for others it might not have been. He has progressed such that his left hand is quite weak and left arm is showing some atrophy in the forearm. Nothing else at this point, although he tells me he experiences a lot of fatigue. Hoping your family member progresses slowly.

V
 
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