Slow Progression Questions

ChesterB

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I was diagnosed last October and I’m about two years since the symptoms began. I have limb onset and right now it’s mainly my right hand and arm, with some additional weakness in my hips and legs. Most of the muscle between my right thumb and forefinger has atrophied, so I’m have trouble writing and using keys, eating utensils, etc.
I’m taking Riluzole and waiting to start the oral Radicava clinical trial.
Has anyone else experienced the same slow progression and what can I expect down the road?
 

Nikki J

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I think we are all so different. I am not sure any of us can tell you what to expect. I am leg onset It took 3 years to spread but then went to my other leg and the arm on the same side as the initial onset almost simultaneously. It was another year for the other arm
 

ChesterB

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So slow. Don’t know if it’s a blessing or a curse.
 

nona

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I have bulbar onset and slow progression. But it is different for everyone. You have time to plan and to bank your voice, if that's meaningful to you. The benefit of slow progression is having the time and energy to travel and make memories. The down side is eventually feeling sick and tired of being sick and tired. This forum helps stave that off.
 

Clearwater AL

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Fortunately, from the numerous members (PALS) here on this Forum who are
experiencing slow progression the prognosis of 3 to 5 years from diagnosis
seems to be changing. A few were diagnosed 8 or 10 years ago.

Hopefully it's from better treatments, drugs, awareness or actually misdiagnosis.
Yes, that is possible and becoming more defined. ALS has so many mimics.
And... there are those who believe their diagnosis is ALS even though
Neurologists may have diagnosed otherwise. I guess this Forum helps them too.

Anyway, slow progression is a blessing. But... it's still a prolonged heavy burden
for PALS and CALS. Which is it? Hard to decide.
 
Last edited:

ChesterB

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So much to deal with. I am 66 years old. In the last 16 months I’ve lost about 2/3rds of my hearing due to an accident, been diagnosed with ALS, began taking meds for diabetes, and recently lost a brother. My wife is my rock, and I love her dearly, but I’m trying to be as strong as I can so she doesn’t worry.
 

RandomMom

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I am a slow progressor as well. Similar symptoms to you but I am fortunate to be left handed so I can still do most things OK. Fatigue is a big problem for me and I have pretty bad neuropathy in both my hands and feet. While I am going a little stir crazy at home, it has helped me work-wise since I am working from home and I don't have to drive 50 minutes each way. I was also losing my voice by the end of the day and that has subsided.

I don't post much as I know that my issues are so much less than most but it is hard worrying (or trying not to worry) about what's ahead. I'm debating about how much longer to work, but since my husband still does and we are relatively young (55 and 56), I will keep doing it for now.

I have been taking Riluzole and Radicava for a year now. No side effects and I have my routine down pretty well.
 

KimT

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Hi Chester,

That's a lot on your plate.

My progression was so slow I was convinced it was wrong. I went to Mayo, University of Florida, University of South Florida, and Johns Hopkins.

My local neurologist believes he discovered some abnormalities very early on, long before I even noticed them. Back in 2013 I fell while on a run and suffered a traumatic brain injury. A few months later my metabolism was so fast I couldn't maintain 110 pounds on 3,500 calories a day. Finally, that stopped and I gained some weight, probably 10 pounds. The following Summer I was swimming laps but my left foot kept cramping. There was nothing I could take or do to stop it and it was only my left foot. That went on all Summer but I was still walking long distances, some short runs, lots of swimming, etc. The bottom of my left foot started to twitch and the cramps moved up to my lower left leg. About that time I went back to the neurologist and he did an EMG. He said he wanted me to go to Mayo for a complete workup so I put that off for another six months, then went to Mayo. Their first EMG was classic for ALS but I still had strength so they had me come back every three months for nearly a year before I was officially diagnosed.

That was nearly five years ago and I can still walk. Not fast. Not far. But I can walk.

One of the neuromuscular specialists believes that there is a type of ALS that starts very slowly and perhaps takes years to even manifest one symptom. He said he has seen other patients that last 10 or 20 years after diagnosis, but not many.

I know a guy who has lived 20 years. He's in a PWC and has a feeding tube but he still has the use of one of his arms.

So everyone is different. I've seen fast progressors slow down and almost stop progressing and I've seen people like me speed up quickly. Of course, other health issues only make it worse.
 

nona

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FWIW, I worked for two years after diagnosis. I think you will know when the time is right.
 

Tkthiede

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My progression has seemed relatively quick (from foot drop to wheelchair in less than 16 months with both hands affected, voice and breathing problems.) And I’m wondering the same as you- is it a blessing or a curse.
 

Greerguy

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Check out AMX0035. A phase 2 study with
TUDCA/ PB. Slows down als
Also consider joining ALS no more excuses on Facebook
 

Nikki J

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To be clear that trial is not enrolling. It had promising results. Before the virus hit they were considering the next step. In the meantime some of us take TUDCA but the other element is hard to impossible to get. Even if you can get it prescribed it is very expensive and usually insurances don’t pay for its off label use. It is worth keeping an eye out for a phase 3 trial or whatever happens next There are threads in the research forum about it.

re progression it is incredible how different we are. My family has survival that ranges from 2 years to more than 16 and, of course, we have the same ALS mutation. I once knew a man who had ALS for 22 years. No vent, no bipap,, no pwc no feeding tube. His speech was very impacted and he was very weak but he moved himself around in a manual wheelchair by shuffling his feet. I don’t know what happened he moved and I lost track of him

ALS is said to be a cluster of many different diseases
 

frankb

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slow progressor here as well. chester, please be aware of falling. seems to me each tine that i fell i could notice a decline in some part of my body. my last fall (down a flight of stairs) limits me to either bed or my power chair. don't know if you are a veteran, but if so submit a va claim. over half of als diagnosed patients have had military service and thus automatically qualify for va benefits. also, since you are still employed (and if you have an option for life insurance through your employer) elect to continue the insurance after you stop work - even increase the amount. it is law. good luck, chester ! !
 

vltsra

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Chester, my PALS is a slow progressor as well. The first 3 years after diagnosis he did relatively well; the weakness was fairly confined to his left hand and arm. At the beginning of last year I could see he was struggling. About a year ago he experienced a downturn and needed a bipap at night. He is now on bipap 24/7 and can no longer stand or walk. It's hard to say what you will experience as each person seems to be different. I think he is on another plateau now and hope it is stable for a long while. I'm thankful for the really good 3 years we had as we were able to do things together then.

V
 
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