Is there any point in this?

[Oliverwindsor]

my wife is at a stage whereby she sort of burps as she swallow's.sounds a little like sort of reflux. Just to put you in the picture, she now has great difficulty speaking. It was suggested we see a consultant, this ended up as a phone call to arrange a barium X-ray. He wanted her to have an endoscope examination, I said that was out of the question and we agreed on the X-ray. This is to be done in the next few days. When they find the results, then what! What happens next? They can’t operate, frankly anything is going to extremely upset her, so my question is “what is the point”? Does anyone know of this situation and is there an easy fix? Thanks chaps.

[Derkie54]

Hello Oliver,

I'm sorry I haven't got any answers for you but I share your frustration.

Like your wife L would not cope with an endoscope so for us it would not happen either. It took me over 12 months to persuade L to have an MRI scan. She does not burp but her speech has deteriorated to the point where neighbours can't always understand her (we can).

I'm sure you're doing a great job and some tests are very stressful for the MSA sufferer. I'm just trying to manage the slow decline of my wife and I try to adjust as calmly as possible to the changes as they come, but she does get very anxious.

Last year she had a tooth fall out and last night another fell out so it's a visit to the dentist for us. Is it connected to her MSA or not, we just don't know.

Like you I'm dealing with this for the first time, we're not professionals but just trying to makes our spouses lives as pleasant as possible under the circumstances.

Keep smiling when you can Oliver and yes I agree with you, sometimes it's right to ask what's the point of a certain investigation or procedure.

Regards

Derek

[Hidden]

Hello

Try asking one of the MSA nurses about gastric issues in MSA, ( and maybe also her commmunity speech therapist for a 2nd opinion? They are experts at swallowing and may have some suggestions for adjusting her food/ eating style to minimise symptoms.

You're right it's about the person's overall comfort and wellbeing now, rather than trying to 'fix' people like mainstream medicine does. I reckon you can trust yourself to advocate for her best interests

The magic words seem to be to say to health professionals, that one is taking a more "palliative" approach, focusing on quality of life and comfort rather than unnecessary interventions.

a care wishes statement to this effect, that you can agree with her gp can help if you get any pressure. Or backup from the MSA nurses may do the trick🙂

but it sounds like you're on top of it all anyway. Kx

.

[Oliverwindsor in reply to Hidden]

Thanks for your opinion, I think if I’m being honest your answer is what I was looking for. Yes it is hard to make these decisions when one constantly wants the patient to get better! Now I’m wondering if it’s even worth the X-ray, whatever the results other than a change in diet (which is close to non existent) there won’t be any form of operation, even the barium solution isn’t going to help. It’s even difficult to get to the hospital as she has VERY limited mobility. Just about able to move her arms, nothing in her legs. You can’t blame the system as they are just doing their jobs, however, wouldn’t it be nice if they did the simplest of research just to know what MSA means!

[Helenhooter]

hiya

I'm still waiting for a confirmed diagnosis but I have had repeated indigestion problems for a couple of years which the drs have been prescribing me with gaviscon and a proton pump inhibitor which I've stopped using as they had no effect and made my stomach feel worse respectively. Now for the last few months I've been sick and the food is undigested. I even had a tablet come back 7 hours later exactly as it was. I have also been suffering with awful constipation and I've always eaten a healthy diet and drunk plenty of fluids. It would seem that I have gastroparesis caused by my autonomic nervous system not working properly. I have been prescribed metoclopramide which causes side effects that I already have (unable to walk, stand, balance etc)! I'm hoping this will help my digestion but the chemist can't get it for a week! Maybe it's worth trying it? I will let you know if it helps!

Regards

H