How long?

[Phil M]

How long after Diagnosis did it take for your breathing to be affected? Thanks

 

[sesl]

My mother was diagnosed with bulbar symptoms (slurring, swallowing) in September 2009. She had regular breathing tests, and those tests showed that she was lacking oxygen by March 2010 - that's 6 months.

She now has supplementary oxygen but has refused a ventilator.

It happens faster with most bulbar onset patients.

sesl

 

[CAHPAH]

My wife was diagnosed Sept. 07. In Jan. 09 her FVC was 98%. From that point she started loseing 5% each month until, as of Feb., she is at 33%. But having said that, this effects everyone so differantly, what may have happend in my wife's case or anyone elses is no indication of what may or maynot happen to you.

 

[pepsiman]

One year ago my wife's FVC was 106% of normal. By June it was 68%, by September it was 34%, she passed in November. The range between any two sufferers is so great that no inferences can be made from one to another.

 

[BarryG]

My FVC was 110% in October of 2007and at my last test in January 2010 it was 87%. For some it is fast and for some it is slow, there is no standard regardless of onset type.

 

[irismarie]

LImb onsest with first really eviden t symptoms a year ago . No lmeasurements but too much traying to talk and a big feat like getting into bed and I am huffing and puffing

 

[handinhand]

Hi, Mine started around 90, Every three months I am checked again. Before peg I was at 35,after surgery it was 20, went home after surgery at 26... Came home with oxg. I am wondering if it has gone back up some. I feel like it has. I use the oxg now with the Bipap all night and sometimes during the day when i feel like I can't get a good breath. Other than that I feel GREAT...lol Really i do! Lin

 

[nspoc]

Pat was diagnosed in December, 2004, but probably had symptoms since early 2002. She went on a ventilator in May, 2008. Her FVC was in mid-thirties, but she was on bi-pap 24/7 for abot six months prior to vent. She seemed VERY stable on Bi-Pap. Had a bad pneumonia that led to venting. We had talked about it long in advance and venting was always her choice. She is still with us, but has very little movement left. Venting is not the problem, ALS is.

Beth

 

[t34gib]

There is no way to say how fast or slow any of us progress. I am considered slow progression. But, with that said. I believe I have had symtoms for the last 2 to 3 years. I am Bulbar. Slowly lost my speech over the last year. Can no longer eat or drink, but aside from a slight weakness in my left hand I have no other symptoms. My breathing is less than it was, and I have problems walking a long distance but can still walk for a short par 3 9 holes. I have a cough assist to help keep my breathing passages clear. Still play 18 holes on a standard course with a cart. Everyone is different. I have lost 50 lbs and am on tube feeding. So it may start progressing quicker but Dr. said it tends to stay at same pace. Who knows. Take what you can and leave the rest. NancyS

 

[sadiemae]

My husband is also Bulbar, Fvc was 65 in Sept, 55 in March, and his swallow test done last week was great. No restrictions at all other than common sense. He does have PEG, just do not need to use it yet, and who knows, maybe he wont have to use it. The swallow doc said as much. With this !@#$% disease, every single person is different. Just be prepared in advance. Staying one step ahead is so much better than trying to catch up! HUGS Lori

 

[pepsiman]

I'll echo Lori's statement about staying ahead. It just ran away from us. That was probably the most stressful part of the whole thing. Things started changing on a weekly basis and by the time we were ready for the latest problem there was a completely new one to deal with.

 

[brooksea]

At diagnosis, my husband was 100% and in April 07 at 115%. December 09 he was at 83%. He gets short of breath, but I don't think the tests are accurate as he cannot close his mouth around the tube very well to "suck and blow." Weird how if varies from person to person.

 

[wanda brittle]

glen,when diagnosisin oct 2 2009 was 100%.now in feb 2010 is 37%.i was told between 25 to 30 is the time to get vented.dont know if glen is or not.

 

[Blubear]

Well, my dads very first symptoms were his breathing poblems and slurred speeh. Just remember that everyone disease progresses differenty.
Hugs, BLu

 

[Robert Redmond]

I think it took around 14 months from his first symptoms before my brother had trouble breathing. He may have had slight problems before that since I remember him bring it up before then. He asked me if I ever felt panic'd and couldn't breathe at night. At that time he didn't know he had ALS so we had no clue that he was headed down this road. His neuro had him under the impression he had MG and not ALS.