Old 06-06-2016, 12:15 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2016
City: Rome
State: Rome
Country: IT
Diagnosed: 01/2014
Interest: I am a family member of someone with ALS/MND.
Posts: 2
dadej is on a distinguished road
dadej dadej is offline
New Member (Say Hi)
Join Date: 2016
City: Rome
State: Rome
Country: IT
Diagnosed: 01/2014
Interest: I am a family member of someone with ALS/MND.
Posts: 2
dadej is on a distinguished road
Default Opinion on slowly progressing MND disease

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
dadej is offline  
Old 06-06-2016, 12:26 PM #2 (permalink)
Member
 
Join Date: 2015
City: San Diego
State: CA
Country: US
Diagnosed: 11/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 274
vltsra has a spectacular aura aboutvltsra has a spectacular aura about
vltsra vltsra is offline
Member
Join Date: 2015
City: San Diego
State: CA
Country: US
Diagnosed: 11/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 274
vltsra has a spectacular aura aboutvltsra has a spectacular aura about
Default Re: Opinion on slowly progressing MND disease

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
vltsra is offline  
Old 06-07-2016, 05:34 PM #3 (permalink)
New Member (Say Hi)
 
Join Date: 2016
City: Rome
State: Rome
Country: IT
Diagnosed: 01/2014
Interest: I am a family member of someone with ALS/MND.
Posts: 2
dadej is on a distinguished road
dadej dadej is offline
New Member (Say Hi)
Join Date: 2016
City: Rome
State: Rome
Country: IT
Diagnosed: 01/2014
Interest: I am a family member of someone with ALS/MND.
Posts: 2
dadej is on a distinguished road
Default Re: Opinion on slowly progressing MND disease

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
dadej is offline  
Old 06-13-2016, 10:49 AM #4 (permalink)
Member
 
Join Date: 2015
City: San Diego
State: CA
Country: US
Diagnosed: 11/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 274
vltsra has a spectacular aura aboutvltsra has a spectacular aura about
vltsra vltsra is offline
Member
Join Date: 2015
City: San Diego
State: CA
Country: US
Diagnosed: 11/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 274
vltsra has a spectacular aura aboutvltsra has a spectacular aura about
Default Re: Opinion on slowly progressing MND disease

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
vltsra is offline  
Closed Thread

Tags
als, confused, cure, diagnosed, early, emg, emotional lability, family, fasciculation, finger, fingers, free, hope, mnd, muscle, muscle wasting, onset, reading, riluzole, weakness, work


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Seems I am progressing again AKmom General Discussion About PLS 18 02-11-2013 04:37 AM
new form of slowly progressive Al s Hi Skyehy Do I Have ALS? Is This ALS? 10 08-22-2012 04:15 PM
Learning slowly. DeansWife Current Caregivers (CALS) 17 04-28-2012 03:32 PM
Disease progression halted in rat model of Lou Gehrig's disease MuonOne ALS Research News 21 03-06-2012 03:10 AM
Could this by Lyme or slowly progressing ALS? NotALS! Do I Have Lyme Disease? 17 07-29-2011 12:27 AM
lyme disease precipitates other disease Degenhardt About Lyme Disease 13 02-07-2011 12:19 AM
Progressing ... handinhand General Discussion About ALS/MND 19 06-11-2010 12:29 AM
Slowly going mad al999 Do I Have ALS? Is This ALS? 13 05-14-2008 11:28 PM
Anybody out there with slowly progressing PBP? COlisa General Discussions About PBP 28 12-29-2006 08:25 PM
slowly starting to have trouble swallowing doug mulroy Current Caregivers (CALS) 7 01-23-2006 10:22 AM


All times are GMT -5. The time now is 02:25 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016