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Sidney

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Joined
Jan 9, 2016
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98
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Learn about ALS
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00/0000
Country
UK
State
LO
City
London
Hi

I have been a regular poster on here and am still in limbo after 18 months.

Yesterday after seeing my pulmonolgist my fvc was lower than ever 3.9.

My sniff test was very good though 138.

The sniff relates to the diaphragm so again this has confused everyone.

I remember though violent fasciculations in my abdomen when all this started.I would lie in the bath with water rippling and causing wavs from the violence of my stomach twitching.

I also have a gap where muscle used be between my chest in a line all the way to my navel.This had been noted by the docs.

I suppose my question is will muscle wasting in the abdominal area result in diaphragm /breathing problems?

I am short of breath and frequently wake at night due to apnoea.

Thank you for your time in advance.

Sid.
 
Sid, if you have apnea, regardless of the possible causes, it should be treated. Why are you not on PAP?
 
You're right Laurie. Couldn't get used to the mask so awaiting nasal pillows. What do think about my situation other than that??
 
Still not seeing MND leap off the page.

Is that a hernia running down your abdomen? Does something stick out when you do a crunch?
 
I was pretty athletic Mike and it's the first thing I thought but it runs too long and looks like a gap all the way down almost like the muscles have separated.

At first I thought I was being too self analytical but the respiratory guy noticed it.

I've spoken to him today and he's worried that the lying fec is much lower than the standing fvc which is relatively normal.

Both are on a downward trend though
 
Hi again and thank you for your time and patience. I have taken your advice Laurie and nasal pillow cpap is working. May I ask how thoracic/respiratory onset manifests please?

My sniff is good but fvc and fev on a downward trend.Supine is very low and I can't breathe whilst sleeping which is where cpap is helping.I do not get breathless on walking /exercising(such as it is) but the constant feeling of pressure on my chest worries me.

I have yet another emg at Kings and full lung function in October but in the meantime could anyone help me regarding respiratory/thoracic onset please? Thanks in advance for your time and patience .Sid x
 
Hi again, Sid.

77 posts, none of which seem like ALS.
4 EMGs? 3 neurologists?
You've been here a year and still not limited or disabled in any Activity of Daily Living.

Seems that somehow, you've brought out the patient side in each of us. We probably should have hounded you out of here many months ago. Our most experienced and knowledgeable members have asked--often--that you get on with your life and quit thinking about death.
 
Thanks Mike. Point taken but it's the neurologists and pulmonary guys that keep asking me back! October will be key either way for me.
 
Glad to hear you have the cpap sorted. I hope you will feel better after a time of successful treatment.

We do not generally describe onset patterns here for several reasons. Experience do vary. Descriptions do not always translate well over the internet. Anxious people ( this is speaking generally not referring to you) have taken snippets of descriptions and twisted them to apply them to their situation. These same people also develop symptoms after reading.

What is the percentage difference in your readings sitting and lying?
 
Thanks Nikki. Standing was 4.5L lying 3.9L.Basically I'm really struggling now to lie down and breathe.
 
As Mike mentioned in a previous post. As much time as you have dedicated (79 posts) trying to find every reason found in Google that you have ALS... now do some serious research on Hiatal Hernia. You'll find that most of your symptoms relate directly to Hiatal Hernias. And a Hiatal Hernia can be near the front of the diaphragm or the back pushing against (through) onto the lung.

My brother in law had one, had to sleep in a recliner nearly upright until he had it surgically repaired. And there is a sliding hernia which also affects breathing in the laying position, both on your back or sleeping on either side.

Read up on it and address your doctor with that concern.

PS. The muscle atrophy you mentioned is not related to the muscles that assist the diaphragm during exertion. The diaphragm is a muscle of it's own without exertion... like when you are sleeping.
 
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Thank you for the time and information Al. I will investigate the hernia.
 
If it is a hernia and/or GERD/EE, elevating the head of your bed with pillows or a wedge under the mattress may help.

If that group of diseases is ruled out, my next stop would be a medical geneticist since atrophy like that could be a sign of a connective tissue disorder.
 
Thanks Laurie -so kind to answer..The neuro who is very experienced did mention a possible heriditary neuropathy as an option.

Something is wrong for sure and my last communication with him he said he was 'determined to get to the bottom of the problem'.

I have a new thorough emg in October followed by a clinical.

I suspect that will be make or break.
 
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