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DeeMichelle

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Hi I'm new to this. We have familial MND in our family. 3 of my Dad's brothers and sisters died from MND/ALS so we know how bad it can be. I'm looking for any helpful or positive suggestions, anything at all.

I'm mostly concerned for my Dad now who may have MND himself and is having tests in a specialist neurological centre in Birmingham, England. My Dad's symptoms are a mixture of typical and not so typical. Please stick with me while I try to describe them:

Dad has a lot of difficulty with speech. He did have a mild stroke 2 years ago, which had a very small effect on speech. Over the past year his speech has deteriorated to a point where he is hard to understand unless you know him well and both he and us have to try really hard.

Swallowing is becoming more difficult and Dad has lost a lot of the use in his tongue. Dad's facial muscles have also atrophied this was picked up by his dentist. Dad has been so reluctant to see a doctor.

My Mum has developed an amazing nutritious and tasty menu for him that is easy to swallow.

So far, MND symptoms, right?

Other things: Well Dad is, I'm very proud to say quite active and strives to do things and be independent. Dad has no problems with his limbs. Dad walks, shops, gardens and even had a go at football with my son this weekend. Dad is very brave about the speech problems and still goes shopping on his own and just writes things down if they do not understand him.

Dad has also had a lot of chest discomfort for about 10 years, which doctors have really failed to give a diagnosis to. Maybe this is something separate to ALS does anyone else get chest discomfort? Dad has always worked hard and hardly every had a day off work sick, but sometimes the chest pain floors him.

Dad does not have tremors in his limbs although he is slower than he used to be.

Does this sound like PLS given that he is active and his limbs are not obviously affected, but has severe speech, swallowing and tongue problems.

Please any advice would be much appreciated.

Wishing everyone on this forum love and support.
Dee
 

olly

Extremely helpful member
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Jan 10, 2008
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PALS
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11/2007
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uk
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hi dee

i am so sorry to hear about yor dad. pls is rare, hereditory pls is extremley rare.
peudo bulbar palsy/benign is more a pls problem. if your dad has progressive bulbar palsy it is either pbp or bulbar onset als. in the early stages it is very hard to distinguish one from the other. i hope that helps a little.
people dont post on here too ofton if you go into the general als/mnd section you will get more of a response to your questions
best wishes
caroline
 

Paul Wicks

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Feb 15, 2006
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CALS
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06/2015
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UK
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LO
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Dee,

Contrary to received wisdom, PLS can be familial. However from a pathology point of view, there's little that actually firmly distinguishes PLS or PMA from ALS. Pathologically, people with all these conditions have similar findings, and there's probably actually a spectrum of upper and lower motor neurone involvement in everyone.

The reason it's important to know this is because some older diagnostic criteria in the literature state that if a patient has a family history of ALS, that's an exclusion for PLS. IMHO that's a pretty silly exclusion criteria, but some people will stick to the textbooks...

Paul
 

DeeMichelle

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Lost a loved one
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Thanks Paul my dad has now been diagnosed with MND his symptoms are really Progressive Bulbar Palsy at present. He's had very good support from QE hospital in Birmingham, England. He had one sister with the same manifestation of MND and 2 other siblings with more classic ALS.
Dee
 
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