advice on how to proceed

[blod1]

Hi, I'm new to the forum and based in the uk.
I have concerns over my 78 year old mother who has had dysarthria for over a year. She has other health problems (rheumatoid arthritis, hypothyroidism). In the past, we had put the hoarse voice down to the thyroid, and difficulty with speech due to repeated mouth ulcers she gets as she is on immunosuppressants for the arthritis.

Her rheumatologist referred her for a scope to look at her vocal cords-normal, but a bit dry was the conclusion. A year and ½ ago she was in hospital with pleurisy and as she has been experiencing breathlessness for some time, they did some lung function tests came back normal.

I don’t see my mum very often, about every 2 months, as we are at a distance, however, I noticed the following at the weekend – increased dysarthria and breathlessness, occasional drooling and loss of expression in her face. She says her tongue feels too big for her mouth. She hasn’t said anything about difficulty swallowing, but she’s had a problem with swallowing dry food for years because of Sjogren’s syndrome, so it’s difficult to tell.

I’m no neurologist, but this sounds like bulbar ALS? She is waiting on seeing a speech therapist, but she hasn’t seen a neurologist.

I’m really torn – I don’t want to alarm her, but I also want to get her the best possible support.

I think the GP’s have missed something major neurologically. I appreciate that it may not be ALS.

She hates visiting the doctor, so I would have to convince her of a good reason to go back to the GP. It is complicated by my Dad not being too well with recovering from prostate cancer.

I would really appreciate some advice on how to proceed. Should i/can i approach her GP first?
Thanks for any advice.
Blod

 

[panguinjen]

By all means, approach her GP... You may have some issues with confidentiality if your mom is not with you. I understand not wanting to see a doctor for some people! Good luck!

Jen

 

[st123]

We had no luck having my Dad's 'breathlessness' diagnosed for many months. Because of his age, everyone we saw 'wrote off' his symptoms as being due to some pre-existing condition. Of course, I don't know what's going on with your mother, but you might feel better if someone actually checked her diaphragm. No one (including a pulmonary specialist at a well known hospital) checked my Dad's until it was functioning at less than 60%. Multiple X-rays and CTs of the lungs did NOT show the diaphragm issue. A fluoroscopy clearly revealed it.

 

[Grateful]

It isn't usually possible in the UK for relatives to get involved with GPs in the manner you suggest because of confidentiality requirements.

I am somewhat baffled as to what you think your Mum may gain from a diagnosis of ALS or similar condition.

Why subject somebody at the age of 78 to the sort of painful testing needed for a bulbar diagnosis in order to establish that they have a disease for which there is no cure?

It's not as if there is some remedy available only to people with ALS/MND, and to be blunt the chances of her getting the best possible care are going to be reduced, not enhanced, by suggesting that she has an incredibly rare disease.

Most importantly this seems to be distracting you from the points you should be worrying about. Your Mum's increasing breathlessness is precisely the sort of thing which she should see her doctor about now. Just because her lung function was ok for her age when they last tested her doesn't mean it's ok now, and there are a host of lung conditions which may be causing it, all of which are treatable.

Good luck!

 

[rose]

Blod,

You mentioned that your mom has Sjogrens' and other auto immune diseases. It is a possibility that one of them have moved into her nervous system, rather than it being a motor neuron problem. If this is the case, then, perhaps an adjustment of her medications will help her.

The only way to know is to have more testing done. As I have had testing for bulbar palsy, and do not feel it is overly painful or invasive, I don't see where it would be contraindicated for your mom. At age 78 she may have many more years ahead of her, (my grandma lived to 98 and my mom to 86) and if she can be helped to function better, not only physically, but emotionally (it has to be distressing to her to have difficulty communicating and eating) it would be well worth looking more closely at what is causing her problems.

You said nothing had turned up that much with her breathing tests, but, oftentimes, people will have a muscle problem, not a "lung" problem, so the correct type of lung function tests need to be run. Ask if "restrictive" causes for breathing difficulties can be investigated further,

The best of luck to you and your family.

 

[Grateful]

I am sorry to have to need to burst the balloon but Rose has no comprehension at all of the way that medicine is practised in this country; nor does she understand that evidence-based medicine actually is evidence-based medicine.

Put more simply, wandering into a gp's office here and announcing that your daughter thinks you have some incredibly rare disease which she has learned about on the internet is unlikely to engage the gp's attention beyond him/her making a note that the patient's daughter suffers from health anxiety, or is a member of the "worried well" as we call them over here.

In the meantime, the poster's mother may be dying from the exceedingly common, though treatable, lung complications which attend rheumatoid arthritis. Presumably the poster is too obsessed with looking up ALS/MND to acquaint herself with boring things like rheumatoid arthritis. And increasing breathlessness is something which always should be referred as a matter of urgency to a doctor, but the poster and Rose seem to have overlooked that one as well.

Unfortunately Rose doesn't seem to have bothered herself in establishing the basic facts either, since rheumatoid lung is not exactly a hugely difficult thing to find on the web. I don't know why she hasn't bothered; much less grasped why she believes that she doesn't need to bother about facts.

I do bother about facts because I really do not want to see someone die if that death is preventable. Boringly simple, I know, but that tends to sum it up...