Just been diagnosed

[NCW_1984]

Hi,

My dad has just been diagnosed with ALS. His consultant has informed him that it is not life threatening but after reading up on ALS it seems otherwise. Most websites state that people with ALS have 3-5yrs when first diagnosed? And only 10% of people with ALS live longer than 10yrs? Is this the case?

My dad has been having tests done for over a year now and has only just been diagnosed with the condition, although my dad has been told he is very fit and healthy for his age he has problems with one of his legs and hands and is finding it hard to write and hold things.

Just hoping someone can give me a bit more info on the condition and what to expect.

Thanks!

 

[irismarie]

Perhaps the specialist was trying to keep your dad positive....
"Life threatening" would perhaps give the impression that death was imminent and he wanted to avoid that? But you have done your homework right.........
Love and courage
Irismarie, glad to hear your dad is fit and healthy for his age. That is the weird thing - an awful lot of us are/were.

 

[paleshia]

so sorry about your dad....and sorry for the reality that has hit you square in the face....try not to panic (i know, that is asking a lot).....and take this one day at a time.

welcome to the forum...there are some really knowledgable people here that are super supportive.

we will help any way we can.

 

[imanzcan]

Hi NCW....Welcome to the forum. So sorry to hear about your dad's diagnosed. Wish you didn't have to be here. We have a great group of members here, so feel free to ask any type of questions you wish. May God bless you folks, and have a good New Year's Day!

Irma

 

[halfin]

That does seem to be an odd thing for the doctor to say. It might be a good idea to get a second opinion with such a serious diagnosis. Make sure the neurologist specializes in MND. Second opinions are very natural and appropriate in these situations and most doctors will be very supportive, supplying you with the needed medical records, etc. Best of luck to you and your father.

 

[Howard]

Hi NCW,I was diagnosed in Oct/09 with ALS,your Dad sounds like me,I have a limp in my left leg and weak right hand.its been this way for 6 months now no change.I talked to a friend of my sisters he is the same as me for 10 years now.He was diagnosed with ALS in 1990.It seems it is a wait and see.

 

[joelc]

The doctor is right if your dad is willing to get a PEG and/or trache and vent when needed.

 

[Danijela]

Hi, MND is a progressive disease but it does affect different people in different ways (and there are different types with somewhat different outcomes). I think you may find a lot of answers on mnda (motor neuron disease association) pages, as well as the information about help and support available in the UK. If your dad has not been diagnosed by an mnd specialist, you may wish to seek to be seen by one.

Welcome to the forum and all the best.

 

[Marti]

NCW....Hi and welcome
I 've had symptoms since 97 and it is only in my legs and arms. I still can walk,talk, breath and swallow. I can't walk up stairs and seem to fall over air. I can't get off the floor and toilets very well either, But I do carry a cane when I gone for a long time...like shopping at a Mall.

Also your Dad might be telling you that to not make you worry...It is scary so be strong and keep us informed

Peace
Marti

 

[NCW_1984]

Thank you everyone for your replies. My dad has been seeing a neurologist for at least a year and has had countless tests, I don't think the specialist would diagnose my dad with ALS unless he was 99.9% sure, its a pretty serious thing to misdiagnose!

Just going to try and keep strong and positive for my dad although I think it will take my dad a while to accept what he has (as i'm sure it does with anyone who has been diagnosed with ALS).

Thanks again!

 

[GlennaB]

hi NCW, and welcome. just curious, has your dad had a spinal tap? i had the best neuro in phoenix, and his approach was "logical." i had been going for a year before my diagnosis and until i had the spinal tap, my doc said the same thing. actually i was grateful for the year i didn't have to worry so much. on the other hand, after the spinal tap was done and elevated tau was found, hearing the diagnosis was a tough pill to swallow - no pun intended. if he hasnt had the spinal tap done, i would ask the doctor about that. good luck to you.

 

[rocmg]

Sorry for your Dad's diagnosis NCW_1984 (if the year in your user name is your birth year -- we are the same age.)

People can live with ALS/MND for a long time, particularly it seems if they can learn to adapt to being disabled. There is a drug trial KNS starting st centers in Europe (UK) this year.

Do the best you can to keep his spirits up and hopes high -- it's a very tough job. i try to do the same for my mum who has MND, but i have to admit sometimes i'm not very good at it. we just have to keep them in the game until a treatment comes along!

 

[Katie C]

Definitly an odd thing for a doctor to say. On the other hand the first neuro Glen had told him he didn't need to come back for follow up appointments! Definitly get a second opinion, and seek out an MND specialist to get it from. Our experience has been that the MND specialist we have is, along with his staff, one of our best resources for help and referral.

 

[Zaphoon]

Every follow-up I have, I always ask the doc what the other possibilities are in the way of alternate diagnosis. I think we've about run out of alternates...:lol:

 

[LovemyPALS]

Hi NCW...my dad was diagnosed in 2007. It took many tests for doctors to admit he has ALS. My dad started losing muscle in his right hand first. He couldn't turn the key in the ignition in his car. Mostly, ALS will not be diagnosed unless multiple limbs have the same symptoms. After months and months they finally diagnosed him. Frustrating, because he did research and knew what he had. My dad most likely had it for some time, but since my dad was healthy and fit, it took longer for symptoms to show.

Due to my dad's fitness, it is a slow progressing disease. we continue to stretch him daily, AM and PM, to keep his muscles building. I encourage you to stretch his legs and arms. It seems to help with my dad anyway.

I am most likely in the same stages of what is going on with your dad as I am mine. Please feel free to contact me.

I am sorry to hear about your dad.

Suzanne