Is this the start of MND?

[astro]

Hi there, what an immense amount of knowledge you all have and I really need some answers that we cant get from my mums neurologist.
My mother was a fit and active 72yr old, about 8 months ago her speech started to fail, she got more and more slurred till more recently in about the last month she is unable to be understood.
She has seen an ENT specialist who ruled out a tumor and cancer in her throat.
She has seen a Neurologist and a diagnosis of pseudo bulbar palsy was given.
Still they are not giving us a definitive diagnosis.
She does not have any muscle weaknesses in any other part of her body.
however the ability to swallow is becoming much worse.
She chokes and has to gulp liquids, food has to be soft.
I have noticed she is short of breath.
She has had a CT scan but it really only showed some aging.
Should we expect that something should have shown on the scan?

Is this the start of MND normally? I understand everyone is different.
I am so frustrated that we dont know what this really is, (dr has referred her to the MND support group here in New Zealand) and suspects its MND but how long does it take, until she shows more horrid symptoms?
How much longer after speech and swallowing became a real problem did other symptoms begin to show?
What are we to expect.
What is her life expectancy.
Speech therapy have provided her with a talking machine...... albiet an american accent which she thinks is very funny.

I really appreciate any feedback.

 

[abbas child]

Re: so frustrating

Hi astro,

I am sorry your mother is going through this. I wish I could answer some of your questions myself, but can't. The MND diagnoses take time because only until the disease progresses can it be diagnosed... and we're all very different in our progression rates. I know that isn't helpful. It is very hard to go through this process. I hope that your mother progresses very slowly, even if that means waiting for a diagnoses for a longer time.

I just looked again and your mother's Pseudo Bulbar Palsy is not a disease listed here. I had quickly looked and mistook "Progressive Bulbar Palsy" for "Pseudo Bulbar Palsy". So sorry.

Ann

 

[Zaphoon]

Re: so frustrating

If I'm not mistaken, the type of bulbar issues that people with PLS sometimes get is pseudo bulbar palsy and is due to upper motor neuron involvement.

I'd be interested to know if your mother's neurologist discovered any upper motor neuron signs (Babinski, Hoffman, hyper reflexes, spasticity, etc.).

 

[Jellycat]

Re: so frustrating

Hi Astro
So sorry for the trouble your mum & you are having. Waiting to find out is tough. I hope there won't be any more progression any time soon for your mum.

I am no neurologist so cannot give you answers about your mum. I post because your experience mirrors my own. My mum had the same pathway as yours:slurring, difficulty swallowing, ENT exam, brain scan. Same results as your mother. Then she had blood work, video fleuroscopy & electrical tests. We were told that mum could have mnd but that that might not show on scan.

There is no one test for mnd & so I think neuros rely on observing how a person progresses as well as the tests they can do. In my mothers case, she was told pseudo bulbar palsy & that progression could be quite slow. This was revised just a couple of months later when speed & other symptoms proved otherwise. I don't think anyone can really say how much time anyone has.

All the very best

 

[astro]

Re: so frustrating

Thanks so much for your support. I hate the waiting game! Jelly cat, how long was it before the speech went that other symptoms started. Does your mum having trouble swallowing? Can she eat? I'm guessing we should just enjoy the now. Sadly she lives a good few hours away in the country, hence I have no confidence in the visiting neurologist and would dearly love her to be referred to the city for a second opinion. I just cant think of anything more horrid than this disease and want it to STOP right now for her.

 

[BarryG]

Re: so frustrating

Hi Astro,
So sorry about your mom, her symptoms sound just like mine which started in July of 2007. I first noticed slurred speech and my speech and swallowing got steadily worse and I was diagnosed with bulbar onset ALS in January of 2008. I had no limb issues until almost a year later. I now cannot speak at all and am completely dependent on my peg tube for food and drink and while I can still stand and walk short distances I use a walker and wheelchair.

No one can say how your mom will progress but I would really encourage you to help her to see an MND specialist for a diagnosis and assistance with her eating and drinking.

All the best
Barry

 

[astro]

Re: so frustrating

Now thats a great idea Barry, its quite rare here down under, we are a small country. I will now source a specialist in mnd and work on getting a referral. As i imagined from your story it wont be long before she will need a peg for feeding eh and a lot more assistance. Still in the grieving process I think. I miss my mothers voice. I cant remember the last conversation we had. Take Care!

 

[lehua768]

Re: so frustrating

So sorry about your mom, her symptoms sound just like mine which started in July of 2007. I first noticed slurred speech and my speech and swallowing got steadily worse and I was diagnosed with bulbar onset ALS in January of 2008. I had no limb issues until almost a year later. I now cannot speak at all and am completely dependent on my peg tube for food and drink and while I can still stand and walk short distances I use a walker and wheelchair.

Now thats a great idea Barry, its quite rare here down under, we are a small country. I will now source a specialist in mnd and work on getting a referral. As i imagined from your story it wont be long before she will need a peg for feeding eh and a lot more assistance. Still in the grieving process I think. I miss my mothers voice. I cant remember the last conversation we had. Take Care!

Thanks so much for your support. I hate the waiting game! Jelly cat, how long was it before the speech went that other symptoms started. Does your mum having trouble swallowing? Can she eat? I'm guessing we should just enjoy the now. Sadly she lives a good few hours away in the country, hence I have no confidence in the visiting neurologist and would dearly love her to be referred to the city for a second opinion. I just cant think of anything more horrid than this disease and want it to STOP right now for her.

 

[BarryG]

Re: so frustrating

Ok, so now we have people doing a parrot thing and putting links in their signature.

 

[astro]

Re: so frustrating

Hmmm, i'm all new to this, but not sure what that posting is about from Lehua678?
Mum saw a specialist today, they looked up her nose and down her throat again, but nothing to offer. Looking forward to seeing my new "american" mother on Saturday.

 

[Jellycat]

Hi there Astro
How goes it with the new American voice. It takes a while to get the hang of these machines so don't worry if it feels a bit strange at first.

You ask about my mum's symptoms. She started slurring her words in the evenings in May 09. She also felt like she had a frog in her throat. By November I was the only one who could understand her speech. By Christmas it was gone altogether. I can relate to what you say about missing your mums voice. I miss the chats we used to have. Now having been through a range of American & British voices, I can no longer remember what her voice sounded like.

Other symptoms: liquids became increasingly difficult even thickened. When she got her peg in feb 09 she opted to stop drinking & take all her liquid by tube. Food went from cutting things up small to softer diet to mashing stuff up to purée. We're now at liquidised fish. The ritual of having a meal is very important to her so despite recommendations to stop we keep going. That said most of her calorie intake is by peg.

Falls started in jan 10. By feb she was using a walker. Somewhere after that she started using a wheelchair outside the house for safety & to help with fatique. Gradually distances became shorter. In June she could no longer walk. Now her legs are not weight bearing.

The latest developments involve her arms and neck which are losing strength.

That's the physical side. On the inside I am seeing sides to my mum that I hadn't known before. She was always fiercely independent and determined. She is still that and every step of the way has done as much as she could physically, for as long as she could. But she has also shown huge acceptance and graciousness in the living of this most unexpected turn in her life. She smiles plenty & amidst it all we have a laugh and some fun. So yes, hard though it is to stay in the moment, it really is the only place to be.

Sending you hugs.