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Jan
18th February 2015, 13:50
I am curious to know what onset of MND everyone has/had, I am termed limb onset and my legs though still slowly mobile were where it started with my hands now and shoulders following. I am pretty lucky in that I can still swallow albeit slowly and drink and hold a conversation although not for too long as I tire easily.

Many here appear to be bulbar onset so I have no comparison as to what I can expect with limb onset, i.e. how long before my legs give out completely? or my hands just stop working?

njm
18th February 2015, 14:08
I am curious to know what onset of MND everyone has/had, I am termed limb onset and my legs though still slowly mobile were where it started with my hands now and shoulders following. I am pretty lucky in that I can still swallow albeit slowly and drink and hold a conversation although not for too long as I tire easily.

Many here appear to be bulbar onset so I have no comparison as to what I can expect with limb onset, i.e. how long before my legs give out completely? or my hands just stop working?

Jan:

I am similar to you. Again the frustrating answer is "it depends and is different for everyone". I have wanted to scream when told this when i was searching desperately for some timeline...some certainty. The evidence suggests limb onset is slower than bulbar but highly variable. My researches suggest leg onset ranges between 2 to 4 years before wheelchair bound. Please anybody out there correct me if wrong. How long since symptom onset for you Jan?

A fellow sufferer and searcher


Charles

willsandco
18th February 2015, 14:19
I am afraid the answer is "How long is a piece of string" isn't it? It can go slowly, then turn aggressive on a sixpence. No one knows, do they which is exactly why people live each day to the full, while they have the chance. I have bulbar onset which is different to limb onset. Ask your specialist when you see them, but often they wont commit simply because they honestly do not know. It is all in the hands of God. But I know what you and Charles are saying. It would be so good to have a timeline but, sadly, I don't think it is going to happen. Good to see your name pop up! Are you moved yet? Much love Joycie

Jan
18th February 2015, 14:21
A year ago this very week I had what I term as my 'big fall' however Neuro thinks that my foot slapping the ground when I ran which I noticed back in August 2013 could well have been the start. I am not in a wheelchair full time yet but can walk barely 50 yards without it becoming a real effort. My arms and shoulders are now 'shutting down' on me, I just don't have the dexterity any more

Jan
18th February 2015, 14:24
Yes Joyce we have moved and I am loving the ease of having no stairs!

Ellie
18th February 2015, 14:33
Hi Jan,
I’m afraid nobody can give you a timetable because every person will progress differently.
I also was diagnosed with ALS in March ’07 and was in a wheelchair 16 months later. Although it started in my arm, my legs quickly followed and I didn’t have enough strength in my arms for a rollator. I do however manage a hot lunch daily, coffee through a straw any various snacks. I also take a PEG feed as it takes me a while to eat my finely chopped meal!
Sorry I can’t answer your question.
Ellie.

Jock
18th February 2015, 14:36
Leg drop was the first visible sign for me. I fall into Charles' 2-4 year research, but who knows if I'd fall within the average life expectancy of two to five years with ALS? Possibly so as I have had symptoms for at least two years now and half my body is wasted. If the next two years progress at the same rate then I don't fancy my chances.

Steve
18th February 2015, 15:11
Bulbar onset ALS here. My first symptoms started in Aug '12, I wasn't reacting to training and people thought I was turning out worse for wear. I told my GP I felt like I was towing a caravan. My speech started slurring and I kept dropping things. I was diagnosed 3 months after symptom onset.

njm
18th February 2015, 15:25
I am curious to know what onset of MND everyone has/had, I am termed limb onset and my legs though still slowly mobile were where it started with my hands now and shoulders following. I am pretty lucky in that I can still swallow albeit slowly and drink and hold a conversation although not for too long as I tire easily.

Many here appear to be bulbar onset so I have no comparison as to what I can expect with limb onset, i.e. how long before my legs give out completely? or my hands just stop working?

jan:

I hear what everyone says. However 2 top neuros have also told me that progression is usually 'linear' insofar as the rate of progression ttto date is likely to continue at that rate. Contrary to that view however I see postings of people who have "fallen off a cliff". So who knows. My surmise is that if it has been slow for 3 years it is likely to continue. However in terms of your question "How long before my legs give in?". I have the same question. It haunts me every day. The way I answer it as follows: In following the posts and other sources etc I have concluded that it is very rare, when legs are involved, for anyone to stay on their legs for more than 3 years from leg symptom onset. I have had leg onset for 2 years now. So I give myself less than 12 months. However I am using my own crude guesswork. Another way to get some crude benchmark is to ask another question:
Is there anybody on the forum who has had leg symptoms and yet remained on your feet and mobile for longer than 3 years (from leg symptom onset)?

Best

Charles

Reta
18th February 2015, 16:31
Jan

as you know us you have seen Bill, he was diagnosed in Nov 13 but he had already had drop foot for 18 months in his right leg he is still walking slowly and not far (without the need to rest) but now he is waiting for orthotics to produce another brace for his left leg. That's promising as his right foot we paid out for a carbon fibre one which he found easier that the plastic L they gave him was useless. Unfortunately the carbon fibre shattered after 14 months so we had to buy another one, as the company did a strict 12 months warranty.

When Canterbury gave him his original one they only had plastic which was useless. So Bill has been on his pins quite sometime, but then he is different in the fact he doesn't suffer any bulbar, feeding or breathing problems at the moment.

Glad your move is better for you, we were lucky we are in a bungalow already, just going through widening doorways ready for the inevitable wheelchair.

All the best Peta

BlueEyesOhio
19th February 2015, 02:51
What type of onset?

Symptoms: Mine started with my left hand. I used to make jewelry and I noticed my left hand didn't have the dexterity it used to have. For about 3 years I have had weakness in my legs. February of 2014 I found I couldn't run on the treadmill. Actually, I could hardly WALK for 20 minutes.

I still walk (or shuffle), I can still eat, use my hands (although my left hand has no visible muscles in it). Most recently my breathing has got to 50% and I have gotten a bi-pap machine to help with breathing.

Lynne

Durwood
20th February 2015, 09:47
Mark began with slight speech issues Jan 14, diagnosed with bulbar on-set May 14, lost his ability to speak Dec 14, weight-loss from 88 to 66 kilo's, Peg fitted Jan 15 and Feb 15 arrival of wheelchair, nil-by-mouth and bipap.

All of this has seemed horribly fast.

Trevorhb
20th February 2015, 11:15
Mark began with slight speech issues Jan 14, diagnosed with bulbar on-set May 14, lost his ability to speak Dec 14, weight-loss from 88 to 66 kilo's, Peg fitted Jan 15 and Feb 15 arrival of wheelchair, nil-by-mouth and bipap.

All of this has seemed horribly fast.

I am afraid that time scale seems to about par for the course, it certainly is similar to mine.

Lycanthrope
20th February 2015, 20:31
Hi Jan x my dad was limb onset and I believe he'd had problems for a while before being diagnosed. I think he probably went from being able to walk to not being able to stand within about 12-18 months. The last six months of which he deteriorated rapidly. As you know every case is different. Becky x

Jan
24th February 2015, 17:06
thank you all for your responses, guess this disease sets out its own timelines as to what it will do and when it will do it

DaiTheDragon
24th February 2015, 17:51
Progressive Bulbar Onset
Around February 2013 noticed slurred speech, out of breath, leg cramps and muscles twitching.
July 12 2013 diagnosed.
Now on BiPap 24/7, right hand curled in, can walk a few yards, can't swallow, legs,arms and neck muscles very weak and a few other things that may or may not be related to mnd.
No one gave me a life expectancy but I think in my case it's about 2 years. No one knows, they go on average times I think.
The good or bad thing about this disease is that everyone is different.

David

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