Old 05-05-2018, 04:30 PM #1 (permalink)
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Default Limb progression

My dad was diagnosed with ALS this past March. He has been having walking issues since last summer and fasiculations all over his body. His walking has gotten much worse but he can still get around for the most part. He hasnít had any symptoms related to breathing pr swallowing and his upper body seems to be totally fine. I dont know if this is even an answerable question but does the rate of his lower body progression an indication on how fast the disease will progress? It is likely he has had ALS for over a year now with no signs other than his walking. Anyone else have a similar case?
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Old 05-05-2018, 04:53 PM #2 (permalink)
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Default Re: Limb progression

I am sorry about your dad.

Progression varies so much and people do often plateau. Slow start is obviously good and no respiratory or bulbar involvement is great as is upper body strength.

It is super important that he not fall. A fall can really injure a PALS and it often seems as if things accelerate after. What is he using for walking assistance? Preserving energy and maintaining safety will both help quality of life and keep things from moving faster than they have to

There are people with very slow progression. A friend of mine is 11 years with only one leg affected ( severely now). My aunt was 10 years before she had it move beyond her legs I had three years from symptom onset before it went beyond one leg. I still walk and function. We are / were all outliers

Crystal balls would be wonderful. I long for one. Plan for the worst but hope for the best is all we can do
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Old 05-05-2018, 05:12 PM #3 (permalink)
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Default Re: Limb progression

Iím sorry to hear about your Dadís diagnosis.

As Nikki said, everyone with ALS is unique, especially when it comes to progression and the sequence of how different muscle groups are involved. Furthermore, progression is not linear. So someone can start out with a certain rate of progression and have different rates and even plateau periods during their course. Or legs can progress at one rate and bulbar muscles at another, for example.

Mine started out in both legs (first one, then the other). All other spinal segment areas (arms, trunk, bulbar) now have some involvement with overall rate being slow and leg weakness progressing faster than the other areas. Everyone is different.
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Old 05-05-2018, 05:13 PM #4 (permalink)
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Default Re: Limb progression

Oh, Nikki, you can have my crystal ball. It doesn’t work.
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Old 05-06-2018, 11:43 AM #5 (permalink)
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Default Re: Limb progression

Thanks for sharing everyone. I know there is no crystal ball. Itís very frustrating. My dad started Edaravone (radicava) this past month and we arenít sure if that is even doing anything. Itís a whole bunch of unknowns.
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Old 05-07-2018, 09:04 AM #6 (permalink)
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Default Re: Limb progression

I'm sorry to hear about your dad's diagnosis.

My husband is leg onset. It has been in his left leg for three years, and last year, the EMG picked it up in his right leg and right forearm. His right leg is just starting to show signs (twisted ankle twice in one month) and his right hand his starting as well.

He fumbled with luggage zippers on our trip, he gets cramps in his right hand, and his fingers curl in momentarily into a fist from time to time. He was also trying to use salad tongs a couple of days ago and had to move to a bigger pair because he could not grasp the smaller tongs. He is on Edaravone (Radicava), as well as Riluzole. He plateaued for about 6-7 months and this past progression has leaped forward all within the last 6 weeks. He now needs an AFO on both legs and two canes. Everyone is so different in their progression.
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Old 05-07-2018, 03:05 PM #7 (permalink)
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Default Re: Limb progression

almost the same!!! you dont know or you can not see other things which can be signs of als... but maybe he reached plateau
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Old 05-07-2018, 04:46 PM #8 (permalink)
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Default Re: Limb progression

I'm not even sure where mine started. It was either my left arm or left leg. The EMG shows every muscle tested. I'm thinking my left leg, then my left arm. I can still walk. I fell in 2016 and sprained my right ankle. It healed but now I'm having a hard time walking for any distance. I can still stand on my toes and heels but it's much harder. My left hand is atrophied and is losing strength but I still have a very good grip in both hands. My toes are curled so all I can wear is slippers and running shoes with a big toe box. I'm losing muscle around my knees so my joints in that area hurt. I can no longer squat and get back up.

I've had all over fasciculations for nearly three years.
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Old 05-07-2018, 07:12 PM #9 (permalink)
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Default Re: Limb progression

We truly have no idea if the Edaravone is working. To be honest he is only done his first round and he seems to be getting worse but I suppose we have nothing to compare it to. Today I noticed that when he puts his hand flat it shakes. His toes, however are not affected. He can still walk with with one cane although he stumbles from time to time. Really I was just wondering if his legs could get so bad over a short period is that an indication everything is going to get worse fast but by all of your answers it seems as if there is no way of knowing.
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Old 05-11-2018, 12:12 PM #10 (permalink)
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Default Re: Limb progression

If you are stumbling or walking with 2 canes......You are going to fall! Don't let stubbornness put you in the hospital. Move to a walker.
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Old 05-11-2018, 03:10 PM #11 (permalink)
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Default Re: Limb progression

I realized Dec 2016 that something was wrong with my left leg, I had muscle atrophy and it was much weaker than the right. I was diagnosed with ALS September 2017, and got AFOs on both legs at that time. Started riluzole immediately, and radicava October 2017. Fast forward to today, both my legs are extremely weak and walking is difficult, but I still get around. I use a cane for stability, and do my best to just not walk very far. Without my AFOs in the house, walking is extremely difficult but I can still get around, normally using the walls for balance. I recently got an electric scooter and a wheelchair for further mobility when I want to go out and do things that require alot of walking.

Summary - I went from walking fine to requiring AFOs and a cane in 15 months.

Oh, and falls are the worst. Don't fall, recovery is not the same. The time you spend resting your injuries, you are speeding up the atrophy of your muscles. Take care of your body, that's the most important lesson I've learned on my journey so far.

Shaun
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Old 05-14-2018, 12:52 AM #12 (permalink)
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Default Re: Limb progression

My progression is similar to many here. Foot drop in January 2017. Gradual degredation of right leg due to spasticity and confirmation of ALS in August. Increasing spasticity in hips and start of progression in left leg. By late 2017 walking with two canes became impossible so started to use walker. I bought a powered wheelchair last week. My variant is upper motor neuron dominance so very little muscle wasting or weakness except above the right knee. Still muscle strength there however and not too much loss. Widespread fasiculations since summer 2017. I have an AFO for my right leg and Botox injections to reduce spasticity. I have been on Edavarone (recommended dose) since October. Can’t say if it is helping or not. Summary - foot drop to cane about eight months, foot drop to walker about eleven months, foot drop to wheelchair about sixteen months.
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Old 05-15-2018, 02:43 AM #13 (permalink)
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Default Re: Limb progression

Thanks everyone. This site has been very helpful and I am grateful for all of your responses. I didnít even know gait problems were a major side effect of Edaravone. I hope that is contributing to his walking situation. I sure hope this Edaravone is doing something. Itís not free here in Canada yet 😓
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Old 05-16-2018, 12:15 AM #14 (permalink)
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Default Re: Limb progression

Karzy,

I don’t think you can pin gait problems on Edaravone. I would say gait problems are caused mainly by ALS and may be worse with Edaravone. I have gait problems but they were there long before my infusions and during the infusion cycle and when I am on my drug free cycles.

The vibrations through your father’s hand is called clonus. It is a side effect of upper motor neuron inflammation. One of the most life changing posts I received from this site from Nikki. She mentioned my ALS variant resembled upper motor dominance. That affects many things including life expectancy.

You said he has widespread fasiculations. Does he have any weakness or muscle wasting? If not, and he has mostly spasticity, clonus and the Babinski sign he may be UMD too. Always great to look for a silver lining!

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Old 05-16-2018, 01:03 AM #15 (permalink)
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Default Re: Limb progression

By the way, the rumour is Health Canada has received an application from Mitsubishi Tanabe Pharma to market Radicava in Canada and it will be fast tracked for approval. Also, there is a Dutch Company formed by two men from the industry who have ALS and are trying to develop an oral version of Edaravone.
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