Progression

I have been seeing a neuro doc for just over a year. Was sent to the ALS Clinic at Duke Medical University. Somewhat relieved... no diagnosis of ALS. But... they did not rule it out at that time nor has my neuro doc. My weakness, breathing problems (Pulmonary Doc said were neuro muscular related) and problem with swallowing (swallowing test indicated a problem) have thankfully so far been slow but progressive. Nothing is getting better or gone away. I've read many posts here where the events concerning ALS seem to cascade rather quickly. Slow progression must be considered a blessing but is it uncommon?
I'm 65 years old. Is there any indication that age may sometimes determine progression. So far I'm still in the 'fortunate' limbo of no ALS diagnosis but wonder and curiosity are hard to try and dismiss sometimes.

>I'm 65 years old. Is there any indication that age may sometimes determine progression. So far I'm still in the 'fortunate' limbo of no ALS diagnosis but wonder and curiosity are hard to try and dismiss sometimes.

I don't think there are many correlations with ALS, except a 2x incidence in veterans. I am 61 and was diagnosed last month, but have probably been experiencing evolving symptoms for about 2 years.

Here's hoping you stay in limbo or, better yet, get some kind of benign alternative diagnosis or the symptoms go away.

Max

Thanks Max, I am a Viet Nam Veteran. I am service connected and have a disability rating for Ischemic Heart Disease under the Agent Orange umbrella of linked diseases. My last heart cath showed my heart by pass surgery is wide open and would not relate to or cause my weakness, breathing problems and swallowing difficulties. The difficulties I'm having now have somewhat taken me by surprise like my first heart attack. (No family history of heart disease, smoked for 15 years but quit at 35, good health and good physical condition and then wham at 45 a heart attack and then a year or so later another.) Anyway, what ever it is... it is. What ever it will be... will be. I'll do my best against
whatever it is.

Thankfully my progression remains slow (I'm 52) seems to have plateaued for several months, breathing still good at this point, left hand useless and typing with one finger on right hand, hoping I continue to have slow progression for years, I'm going nowhere any time soon

Progression varies, however the ALS support group meetings we attended( summer 2011) before we moved out of state, not a single one of the 12 members ( besides my wife ) are alive today.

That surprised me , as many appeared to be in better shape than my wife.

Bowser, sorry to read that your wife is in the last stages of ALS. I guess there are two rates of progression... the rate of onset symptoms up to diagnosis and then the rate of progression after confirmed diagnosis. I'd say a blessing would be that both be very slow.
Maybe the greatest fear if one gets a confirmed diagnosis of ALS is "giving in to it". I'd hope that anyone with ALS would put up their best fight and pray and hope that tomorrow an announcement of a fantastic (miracle) break through has been made and new medicine is available. Prayers to your wife and to you as her care giver.

Celticgirl, I am the "symptom stage" which many may refer to as "limbo". Just had my 3rd EMG and Nerve Conduction Test. All three are somewhat different but this time something notable was found in my arm muscles. Have a Neuro appointment in 2 weeks. As written before my symptoms started with a weak leg about 18 months ago. Now both. Cramps, spasticity and all that too.Then breathing difficulty which a Pulmonary Doc wrote up as neuro muscular and I didn't do well in a swallowing test at the hospital. I have a well known Neuro Doc (fortunately) who has not confirmed or ruled ALS out... yet. He'll go over the 3rd EMG with me in 2 weeks. As for progression, I'm grateful it's been 18 months but... I'm not getting better and nothing has gone away. I'm still mobile but finding things I just can't do anymore. Climb a ladder, carry a 10 lb bag of charcoal up stairs (5'11" at 218lbs and dropping), breath normal and chug some cold Pepsi. Whatever I'm dealing with I hope and pray the progression sets records for slowness. Yours too.