Has anyone ever heard of this--or had it?

[eyeamdry]

Motor Neurones Disease.

A longtime internet friend of mine (non-Sjogrens) has been diagnosed with this disease.  I'm curious if anyone has heard of this and I believe it might be a cousin/sister/brother type of ALS.  Lucy

[Aussierose]

Hi Lucy,
My understanding is motor neurone disease is the UK (and Aust) terminology and ALS is the US terminology.  Both are used for the specific disease Amyotrophic lateral sclerosis and for the group of similar diseases. I think there are 5 diseases in the motor neurone disease family.

Stephen Hawking the scientist is probably the famous sufferer. I think he has one of the related diseases, not actually ALS.

Hope this helps

Rosie

[Scottietottie]

Hi Lucy

Yes I have known someone who had motor neurone disease. He died within 5 years of diagnoses. I fear it is a disease with a very poor prognosis and Stephen Hawking is quite exceptional for living for as long as he has done.

I am really sorry to hear that your friend has developed this horrible condition. Thoughts with you and them.

take care, Scottie.

[Ark mom]

There are a few different kinds:  upper and lower motor neuron disease are two that i know.  I lost a friend last year to ALS, which i think is upper motor neuron disease.  He lived ony two years after diagnosis.  Some people live 10 years or so; although, many die in 5 years or less.  I'm very sorry that your friend has motor neuron disease.  Hugs.

[susanep]

I too am so sorry to hear about your friend. So many things people are stricken with. Prayers

susanep

[Joe S.]

Lucy, Please contact Irish about this. She may have some interesting tips.

[cargillwitch]

so very sorry- my cousin had ALS and died a few years after diagnosis. He was 37