diaphragm spasms

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kfletcher

Active member
Joined
Apr 7, 2014
Messages
56
Reason
PALS
Diagnosis
12/2007
Country
Uni
State
Tennessee
City
Rutledge
Is anyone with PLS getting these? I've started for about a month now, but a few times they've been visible, most of the time they aren't. A few of them really get very uncomfortable & cause shortness of breath & I get gasp trying to talk. Making me nervous & afraid to call Neuro & let him know.
 
I do get these spasms. They used to be much worse, but the Baclofen has helped a lot. When it happens, it is difficult to take a deep breath and I feel pain when I try to move. It eventually goes away. I don't have them very often now, but they do happen every now and then. When they first started, it was frightening. I wondered if I were having a heart attack. Once I understood what was going on, I could relax more.
 
Ok, hood to hear someone else has had them. I was nervous.
 
>They used to be much worse, but the Baclofen has helped a lot. When it happens, it is difficult to take a deep breath and I feel pain when I try to move. It eventually goes away. I don't have them very often now, but they do happen every now and then. When they first started, it was frightening. I wondered if I were having a heart attack. Once I understood what was going on, I could relax more.

same here.
 
I get spasms when the emotional lability kicks in (crying) and to bring myself around I practice conscious breathing (think Lamaze) to break the spasm cycle. Anything that refocuses my breathing and my thoughts helps.

Debbie
 
>Anything that refocuses my breathing and my thoughts helps.

same here -- try to totally relax ... I need to sit up.
 
I take a klonopin & have to lay back, but sometimes they just hurt to even shallow breath. Just know they can sure scare the heck out of you.
 
At this point, I'd ask your Neurologist what is his/her reluctance to prescribing Xanax over Klonopin which is of shorter duration and less effective than Xanax. Have you been checked for a Hiatal Hernia?

PS. In simple words… often a doctor will prescribe Klonopin if he/she has an inclination anxiety in a patient is a just temporary thing (this is something that will pass). Klonopin is easier to stop over Xanax. If you have been diagnosed with PLS… it isn’t going to get better. True PLS symptoms don’t come and go. True PLS symptom are controlled (medication), slowed down. If a control is taken away and the symptoms go away… it’s not PLS.
 
It's definitely not anxiety. I was diagnosed in 2007 after being watched & many, many tests for everything under the sun. I just don't like that he just seems to be to quick to say more meds, and I'm tired all the time already. However, the klonopin in higher dosage is helping with the spasms. I've just decided that I'm gonna work through the MDA & find a new neuro. I mean I even called about my emg results from over a month ago & he still hasn't read them....overall just not happy with him at all.
 
Hello there...You are so right if you are afraid (for whatever reason) to tell your Neuro about the breathing, maybe it's time for a new Neuro. Not knowing the results of your EMG is just not good enough.
I am fortunate to not have breathing problems. I have GORD as well, however, and if I eat too late at night, I often wake up and my whole body is hot on the inside until I burp. The first time it happened was very early in the picture and Wayne called the ambulance. I now just sit up and work through it. I keep meaning to put the towel under the sheets as Al has suggested before. If I stop slipping down the bed it may be more controllable.
Prayers for you in your search to find a Neuro. Keep us informed on how you get on?
God bless, Janelle x
 
My diaphragm spasms are usually self-induced. When I reach backwards, like when reaching to the back seat of a car from the front seat, it seems to trigger these scary spasms. Does anyone else experience this problem?
Thanks, TB
 
Hey TB, sorry no. I am only a passenger these days, so I sit on the same side as you driving. Therefore my weak side (right) is the side that tries to stretch to the back of the car. Not only can't I do it, it makes me slightly short of breath from the exertion but no spasms. Gee I hope that's not a sign of things to come? I will file it in the memory bank and compare notes if things change.
God bless, Janelle x
 
Diaphragm spasms are not really in the window of PLS. If you have been diagnosed with just PLS (or in a lingering diagnosis of such) and you are having diaphragm spams/issues... you need to see a ALS Pulmonologist or a qualified ALS Specialist ASAP. PLS will affect the truncal/abdominal (chest) muscles creating a breathing problem with exertion.... very very rarely does it involve the diaphragm or the other involuntary muscles.
 
Thanks Al, a relief there's not that to look forward to, on top of everything else.
TB and kfletcher...please, heed Al's advice and go see someone.
Please keep us updated.
God bless, Janelle x
 
I'm really trying.
 
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