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rocmg

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dear all,

thanks for taking the time to read this.

i live in new york, originally from Ireland. My mum visits me twice a year in NY and this xmas I came home for an extended holiday. I'm worried my mum has ALS.

When she visited me in July she complained a little of slurred speech. i saw nothing wrong with her. she seemed fine to me but she obviously knew something was up. when she visited me again just before xmas (she came to take me home) I met her at the airport and she burst into tears. she couldn't cry and talk so we just stood there holding each other for ages and then she dried her eyes and we started to talk about what was wrong. she's very depressed and emotional. she speech was not bad but noticeably slurred -- as if she is talking with a cold or something.

i've missed out on so much of her life this last year while i've been at university in america. she told me she had been to see a neurologist who said she was fine and shouldn't worry about it -- to come back in 6 months. although he said if she wanted he could give her riluzole if she wanted it -- although he did not give her an ALS diagnosis. All the tests, brain scans etc seem to indicate normalcy and were inconclusive.

our family doctor says her speech problems could be the result of a virus that will take a year to dispel and for her speech to come back. but she is not a specialist so i'm not sure i trust her opinion.

she has no other symptoms that might suggest ALS. could this be the very early stages? i'm so scared and i'm not a strong enough person to be able to deal with this.

could the speech problem be owing to something else? when should one assume that they have ALS? Im sorry this is so disjointed but I need to talk to someone.
 

mndireland

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Hi, I just read your post and had to reply. Where does your mom live and where is her neurologist? We live in Dublin, Ireland, and luckily for us the best neurologist in the country and Uk we believe is here. She is always in Canada and Usa, Cuba etc working for Mnd and she really is great. What you should do is try and get your mother admitted to hospital (which is a task in itself) so that they can carry out a number of tests, this should determine what is the cause of the slurred speach, it could be any different neurological reasons and not necessarily als.
If it is als sometimes the progression can be quite quick so the need for medication and equipment can be upon you in a matter of weeks or months, not to scare you but it can make things easier when help is in place, and can slow down the progression so you can carry on things as normal for as long as possible.

If you want any advice on contacts here in Ireland, just send me a message or reply to this mail, the mnd association and the HSE are actually brilliant. And compared to some of our pals in other countries we do get a lot more benefits.

Hope your moms diagnosis is something minor, let me know how you get on.
 

rocmg

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hi there...


thank you so much for your reply.

i would definitely like more information on your neurologist.

we're in belfast and i'm trying to make the decision whether to return to the US or stay in Ireland to be with her. Obviously if she is diagnosed with ALS I will definitely come back.

She has a history of thyroid problems, so at the moment I'm hoping this could be myasthemia gravis rather than ALS.

I have missed out on a lot of her life these last few months so it is kind of bewildering to me to come back and have to deal with this. my brothers and dad are in a kind of denial about the whole thing. they think her speech is getting better but to me it is getting worse and is definitely worse than when i saw her in July. Her neurologist in Belfast offered her Rilutek at their last meeting in October -- she said the conversation they had was: "I can give you this medication but you don't need it" which is a pretty crazy thing for a neurologist to say. I mean, it's not like handing out sweeties. This is a serious condition and for him to be so flippant infuriates me. I've left messages with his secretary since I want to talk with him directly about what he has been telling my mum. I have yet to get a reply so I'm trying to seek out a second opinion but I am only taking her to a doctor who can demonstrate a higher level of professionalism than this one. How dare he say that to her without giving a diagnosis! Is that normal!?

Sorry for the rant but I'm sure a lot of people here can relate to my frustration. I can't figure out how to private message but please do forwad me any information you think could be helpful.

god bless.
 

CindyM

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You will be able to send private messages after a few more visits and comments. It has to do with spammers and the software needs to learn you are a real person, not a "bot."

I hope all proves well with your Mom. It would be good if she can be seen by a specialist, though. There are a lot of diseases that mimic ALS and she could have something treatable. Meanwhile, lean on us. Cordially, Cindy
 

Marjorie R. Wilcox

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I too, hope all proves well with your Mom and that she doesn't have a motor neuron disease. I just want to tell you, my husband has ALS and he has never had slurred speech, neither does he have any problem with swallowing. ALS comes on in different ways and in different degrees for different people. There are many reasons for symptoms such as your mom's, so it really takes a doctor to diagnose and test. M
 

mndireland

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My moms neurologist is Dr. Orla Hardiman, I can not reccommend her enough.If you google her name you will find a lot on her, all good. Dublin is only just over an hour away now with the new motorway. She is at Beaumont Hospital in Coolock, just off the main motorway from Belfast, really its not a long drive at all. We were a long time with no diagnosis, going from gp to hospitals with no answer, nearly a year later still struggling for answers we got an appointment with Dr Hardiman, on her first look at my mom i think she knew. My mam's problems started in her hands, they just seemed to stop working and had no strength, I thought this was a nerve problems but something a simple operation could fix. Over a year since diagnosed and her speech is really good, only slurring in the evenings really. Dr. Hardiman and her team are excellent and the support has been unbelievable from them. If you could just get her an appointment there, your gp may have to refer you but that can be done, she will tell you straight out what she thinks, she is a very straight forward doctor, and does not only deal with mnd but also ms and other neurological problems. Im not saying she has anything to worry about but the worst feeling is not knowing, and thats when you worry the most!
Dr Hardimans number is 01-8092174, you might be a few weeks waiting but she is worth the wait. Let me know how you get on?

Take Care x
 

Al

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Hello rocmg. Welcome to the forum. Sorry about your mum. If you have anything private that you want to send to mndireland let me know and I can fix it so you can private message her. You can PM me or CindyM by clicking on our name in a post and clicking on the send private message tab. Hope we all can help you out.

AL.
 

rocmg

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thanks all for your responses. i'm hoping and praying that this isn't bulbar onset. i'm going to try and get an appointmnet with mndireland's neurologist this month.

i'm still at a loss whether i should go back to America or stay here with her... if it's not ALS then I will go back and visit again in 3 months... but if it is ALS, and I visit again in 3 months she could be severely changed and it will break my heart for not staying here with her.

Generally bulbar onset is more aggressive, right? She has been complaining of change in speech since May. I only noticed it this xmas. My dad and brothers said her speech was much, much worse in August/September and seems to have come back.

Can anyone tell me if this sounds familiar?

The neurologist said he thought he might have heard some crackling in an electrical test he did on her spine. to me her speech is getting worse but im not sure if it actually is or if i'm imagining it.


i'm thinking the worse and hoping for the best here.

god bless.
 
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