Progression of ALS and FVC values

[tripete]

At my last clinic appointment my Doc made the comment that my progression as a whole had been relatively slow. This caused me to wonder why I was feeling the effects of it so prominently.

As I have a lot of time to think, her comment began to irritate me as it did not seem to take into account what I have been experiencing.

I was diagnosed in late November of 2015. I had gone through close to two years of appointments prior to that trying to figure out was wrong. That puts me at first symptoms occurring three and a half years ago.

At my first visit with a pulmonologist (after my symptoms had begun) I had an FVC of 170. They immediately dismissed any lung problems. A few months before that appointment I was also running marathons - 26.2 miles, Biking 100 plus miles, swimming 3 plus miles and preparing for a race to do all of them back to back.

Three and a half years later I cannot walk 20 feet to the kitchen without being out of breath and having my legs burn like I have ran for several hours and I cannot climb stairs at all.

The point, while for most people where I am at today may look like a slow progression based on an average persons physical condition, but for me having an FVC under 40 represents a better that 130 point drop, not a 60 point drop that an average person might have. I believe this has the effect of making me feel worse than maybe I am? The same with being able to run, bike and swim so far compared to now. For me the changes are extreme and the progression is rapid.

This is not however just about me. It is the case with all of us who are suffering as we all have to adjust to the new limitations and ever present changes caused by this monster. Our progression is based upon who we are not the indiscriminate "average person".

I am thankful that I started at a "high" level as it may allow me to live and enjoy my family a bit longer.

 

[ShiftKicker]

Re: Progression

One of my doctors often laments she did not know my baseline before this all started so has no idea what my fundamental changes are. I, too, was an athlete, and had an fvc of 105% over a year after my first symptom (which I think was poor for me) and had tremendously muscular legs (spasticity makes'em look good!), so my reported changes and notes about how this affected me fell on less than receptive ears.

Pete, know that all of us here know what you're going through and value and hear the profound loss you are feeling. It is NEVER reassuring to have a doctor say "You look great!" or hear a comment from a doctor that lets you know they are not understanding how much this is affecting you. It can come across as dismissive and not reassuring, as they might have meant. You are a whole person and NOT a series of symptoms that add up to ALS.

 

[KimT]

Re: Progression

I feel the same way about my strength. If my doctor only knew I had the strength of a man and how athletic I was he could see how much and how fast I've changed. I get it.

 

[gooseberry]

Re: Progression

At one point I took a picture of Steve pre ALS to show the doctors. It was eye opening for then

 

[chally]

Re: Progression

I feel the same way about all this loss of ability to function . I too was an extreme runner,kayaker, mt.biker,rock climber, triathlete etc. the one thing Bedlack told me he has noticed in a majority of pals is that we were physically fit and not just a walker or jogger but usually extreme physical condition. That's why there is a statics that say 50 % pals are military . Military IS extreme fit. He's ( bedlack) checking this out why so many fit people git this nightmare. Anyway, too windy, I am learning every day about surrender& acceptance and as I do I actually feel the disease plateau and when I git in a $hit fit I feel it excels rate. Go figure, attitude of gratitude goes a long way for this pal . Love ya all chally

 

[tripete]

Re: Progression

Chally, the two highest by percentage of over represented groups with ALS are military and endurance athletes (triathletes and runners). My guess is that between poor nutrition and pushing our bodies beyond when are minds say stop causes a physical breakdown -ALS.

 

[Statius@]

Re: Progression

I certainly wasn't an extreme athlete, but swam with a masters swim club for many years and on my own before that, as well as intermittently doing weights. I probably did 2-3000 yds several times a week from my 30's till my late 60's (and now manage 1200 or so twice a week, VERY slowly). I was also in the military, but only for a couple of years 45 yrs ago. I'm skeptical that either factor led to my ALS, but who knows.

 

[tripete]

Re: Progression

Statius, I was just proposing my thoughts on what causes such a high percent of endurance athletes and military personal to be diagnosed with ALS.

I believe ALS is actually multiple diseases and until the medical industry get their heads out of the pharmaceutical industries behinds and begins to explore obvious links and investigating common groups they are never going to get anywhere.

On perfect example of this is they say that no two ALS patients have the same progression. Quite to the contrary all the research I can do suggest that those of us with repiratory onset follow a VERY similar path - It make me wonder if anyone has looked at different groups in this manner. They have looked at life expectancy of Respiratory versus, Limb, versus Bulbar, but never to my knowledge tracked the progression path.

 

[starente15]

Re: Progression

It's an interesting topic Pete. My dad also served in the military and developed respiratory onset. We met another Vietnam vet who has ALS and he did research into the area he was stationed. He found that agent orange had been sprayed the day before he was sent there. It's hard not to think there could be a correlation.

 

[soonerwife]

Re: Progression

Some think that chemicals caused my PALS. I'm sure we will never know. He was a painter of oil field pumps for 31 years.

He was not into extreme fitness or the military. Although he was in very good shape physically.

 

[scaredwifetx]

Re: Progression

Steve was not into extreme fitness but has always been lean. He is one of those people that could eat anything he wanted and never gain a pound. He was a Cabinet Maker/ Woodworker and was never in the military. He was around finishes and paints. I also wonder how long they may have had ALS with virtually no symtoms, then small unnoticeable symtoms to a more rapid decline. Steve is involved in a study where he has done very long interviews about his past. The study is done to see if they can find any common answers but I also believe like Pete that it could be multiple diseases or causes.

 

[KimT]

Re: Progression

I know that I have been exposed to chemicals. I'm chemically sensitive. I grew up in a house full of smokers. When I moved to Florida, I lived in apartments that were frequently sprayed for bugs. When I finally got around to making decent money, I moved to a golf course community. There are no bugs here.....just lots of pesticides.

Back in 1999 I got very ill. I was underweight and my body stopped digesting fat (I was doing a lot of running/walking/playing on the golf course, almost every day. Anyway, I ended up at Mayo clinic and they thought I had an autoimmune disease of some kind. My muscles got very sore and they eventually diagnosed me with fibromyalgia. When I told my cousin, who was a Lt. Col. in the army, she said my symptoms sounded like Gulf war illness. Ever since then I could not stand to be around perfume, cigarette smoke, or any other chemical odors. I recently looked at my past Mayo records on the portal (1999-2000) and I had been referred to a neurologist there because I had "brisk reflexes in my legs" and tremors. I didn't even notice those things and I completely forgot about seeing a neuro until I recently looked in the portal. I believe this disease could possibly have an incredibly long "incubation period." I also believe that stress can trigger it's manifestation.