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memyers

New member
Joined
Mar 23, 2017
Messages
2
Reason
Loved one DX
Diagnosis
02/2017
Country
US
State
GA
City
Atlanta
My mom was recently diagnosed with ALS (1st opinion at Mayo and 2nd at Emory). She has bulbar onset and her limbs are still quite strong. Her pulmonary tests show severe weakness (<50%) and her ability to swallow is quite poor. She is having a feeding tube inserted next week at Mayo. She wants to do more things while she still can but she feels terrible most days. She is experiencing an "internal" trembling and sometimes burning sensation that is often throughout her whole body. It seems to be some combination of anxiety and ALS-related symptoms but we can't seem to get it under control. Does anyone have any suggestions for possible treatment options - physical therapy, drugs, psychiatrist, etc.?
 
Internal trembling and buning are not als symptoms, what does the dr say about it?
 
The burning sensation is curious. The internal trembling sounds like anxiety--the stress of knowing she has ALS.

I think she should see her GP medical doctor.

Please fix your profile interest if you do not have ALS yourself.
 
Maybe both caused by anxiety/panic about the diagnosis. I know my own sensation of panic involves feeling hot flashes/flushing all over my body. It is not constant though, just arises in moments of sudden anxiety/panic. Panic attacks can make you feel hot, shaky, nauseated, make you throw up, make you feel you can't breathe/cause shortness of breath, make you feel like you're having a heart attack, etc. You said her respiratory function is not good, and that would also make anxiety symptoms worse-- when anxious your HR speeds up and your breathing becomes fast and shallow, now imagine you already have trouble breathing.. Perhaps her doctor could prescribe something to help. I think a lot of anti-anxiety meds (ie benzodiazipines) are contraindicated with respiratory problems though, so make sure if you are talking to a PCP that they are VERY well aware of any breathing issues.
 
Is your mother taking any medications? Some medications can cause agitation, restlessness or a feeling of vibration- akasthesia is the official term.
 
A friend called me and complained about internal trembling. She had ongoing stomach issues. Everything except stress was ruled out.

I know benzos are controversial but they help me with muscle relaxation and stress.
 
Anxiety and we've been treating that but seems like it could be something more. She has never been remotely anxious or prone to anxiety or panic attacks.
 
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