Respiratory onset MND?

[PabloB]

Hello

I'm concerned about early stages of respiratory onset MND/ALS

I'm 68 years old and have never smoked

Normal EMG recently and yet having breathing issues with strange discomfort across deep in mid-upper back and diaphragm plus autonomic symptoms (bowels, erectile dysfunction etc), sudden weight loss late last year, since January night sweats even on cool nights and muscle atrophy in upper body since late November etc

Have full mobility in legs, arms and hands

Cognitive skills and functions are fine

Had just about everything else ruled out via MRIs, blood tests, other scans etc

An experienced physiotherapist has detected 'restrictive' breathing pattern involving the diaphragm

Follow up with neurologist is not scheduled until May unless cancellation spot becomes available

He's only previously had two cases of respiratory onset MND

Can anyone else relate to this? Seems that atypical symptoms or onset like this make it hard to get reliable information and what test options might be next to consider

Any suggestions would be appreciated

 

[lgelb]

One really cannot quantify restrictive breathing or any other kind without pulmonary function testing. I am not sure there is a clinical indication for PFTs, but hopefully they are available where you are for your peace of mind. Perhaps your GP can order them.

This does not sound like MND, period, let alone respiratory onset, which is pretty unmistakeable and not supported by anything you have mentioned. Autonomic dysfunction can be down to some specific conditions, erratic diet/sleep, postviral complications, stress, and much more.

While you await the neuro appointment, you can self-assess your sleep, which could have a lot of influence on all the rest, with a wearable; keep a food/liquid/sleep/symptom diary, and think about next steps from the standpoint of presuming MND is not the issue. I really don't know how you jumped there, but there seems no reason to, at all.

 

[PabloB]

Thanks for your reply

A close friend had experiences with others who had MND

I've read there is increasing recognition that autonomic symptoms can often be associated with it

as I mentioned Night sweats have been a feature along with those breathing issues which are obviously not yet advanced to fit and "unmistakable" state

Overall my set of symptoms have expanded and edged on, with virtually every thing else ruled through a myriad of tests - yet no-one has been able to explain causes

for a PFT, what type of test would be ordered?

 

[lgelb]

Whatever you think you have read is wrong. Friends of friends are not scientific evidence, with sympathy for whatever your friend has experienced.

Breathing issues in respiratory -onset ALS (or respiratory-onset anything else) are not insidious. They do not stealthily build up.

You can have PFTs (pulmonary function tests) run to make sure. Adults can have late onset of asthma, and, of course, COPD. Neither is MND.

With night sweats, it would be typical to check for cancer and infection, which you say has been done, and hormonal imbalances, which I presume were also part of the labs.

I don't know where you get ALS out of night sweats. Again, there is lots of scary but unreliable content out there on MND.

Stop reading. Keep living. You're best advised to block this and any other sites relating to MND.