worried for my husband

Status
Not open for further replies.

sjwong

New member
Joined
Dec 30, 2018
Messages
5
Reason
CALS
Diagnosis
02/2019
Country
US
State
MA
My husband lost strength in his left hand and is unable to touch his thumb to each finger as of two weeks ago. He has developed continuous muscle fasciculations in both of his upper arms and now both of his hands. He does not have any pain, tingling, or numbness. Just "stiff" fingers and weakness. He has an appointment this week for EMG testing. Am extremely concerned that this is an early onset of ALS. Please advise.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,816
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
You’re right on to get EMG testing.

There are still non-ALS things that need to be ruled out including motor neuron neuropathy, inclusion body myositis, and cervical spine stenosis.

Ideally he should be evaluated by a neuromuscular disease specialist, especially if there is anything fishy on the EMG.

Best of luck.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,252
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Let us know what happens. If the emg is suspicious for a neuromuscular disease I recommend Mass General if you are not already there for a second opinion
 

sjwong

New member
Joined
Dec 30, 2018
Messages
5
Reason
CALS
Diagnosis
02/2019
Country
US
State
MA
Hi there,
I received the results of my husband's EMG but not sure what it may all mean. Would you be able to look at the results and tell me what you think? Thank you so much; I really appreciate all you do for everyone.
 

Attachments

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,252
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Hi first what were you told? Who did the study and what were their recommendations?

My non neurologist opinion is that it is not diagnostic of ALS and does require a neck MRI but you should be getting a neuromuscular opinion at Mass General.
 

sjwong

New member
Joined
Dec 30, 2018
Messages
5
Reason
CALS
Diagnosis
02/2019
Country
US
State
MA
Hi Nikki,
The doctor said she couldn't give any diagnosis b/c she needed to rule out other things first. The next step is a brain and spine MRI that will happen this week. Blood results were normal with the exception of elevated cpk levels and very low Vitamin D level. In the meantime, my husband's left hand is getting even weaker, his right hand shakes when he carries items, the fasciculations are more widespread and he feels tired, weak, and stiff.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,252
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
The MRI definitely needs doing and it is great it is happening this week. Hopefully you will get results quickly. My experience is they are usually read in under 24 hours. I hope it gives answers

Please keep us posted!
 
Last edited:

sjwong

New member
Joined
Dec 30, 2018
Messages
5
Reason
CALS
Diagnosis
02/2019
Country
US
State
MA
MRI’s came back with mild stenosis and nothing that would cause his muscle weakness. Doctor is recommending another EMG scheduled for March 7. In the meantime she is referring us to the ALS clinic at MGH. I am assuming it’s just a matter of time before my husband gets the definitive diagnosis.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,252
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Sorry to hear this. Mgh is great. You will find threads about it here. I will message you in case you have questions about mgh you want to ask privately
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,816
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Sorry to hear it. Sending you and your husband good thoughts. Feel free to ask all sorts of questions here.
 

sjwong

New member
Joined
Dec 30, 2018
Messages
5
Reason
CALS
Diagnosis
02/2019
Country
US
State
MA
Went to ALS clinic today and the diagnosis has been confirmed. 😥
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,252
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am very sorry. I know you are both in shock. When you are ready to talk and ask questions we are here. Feel free to message me too
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock
No Thanks