Old 06-12-2017, 06:48 AM #1 (permalink)
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Default Mark in the UK

My symptoms started with speech issues 2 years ago. I didn't have any noticeable twitching around 9 months later, when I noticed twitching in my left arm and thigh. I have had constant twitching in my left leg (thigh and calf) for over 12 months now, but still no limb weakness at all. I have some weakness in my tongue and facial muscles, but that's it. I do suffer badly with cramping, especially in my hands after typing or playing the piano. I have sporadic twitching all over my body, but the leg is constant. More recently, past couple of months, the twitching in my left arm has become more intense and frequent, but no apparent weakness in that area at the moment.

Does anyone have any suggestions for easing the twitching? I've tried magnesium supplements, but they don't seem to help. The twitching in my left arm is driving me crazy

I was diagnosed with 'probable' ALS two months ago.

Mark.
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Old 06-12-2017, 07:18 AM #2 (permalink)
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Default Re: Does twitching decrease as mobility decreases?

Sorry to hear about your dx. You have found a great place for support. Sorry I don't have any advice about the twitching.
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Old 06-12-2017, 07:40 AM #3 (permalink)
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Default Re: Does twitching decrease as mobility decreases?

We were told that if the pattern is to develop twitching before weakness sets into to a limb it will decrease as strength decreases because the nerves are no longer trying to connect to the muscles. That applies only to SOME diagnosed and progressing people, not first symptoms in ALS. That's all per our Doctor. He said there are many individual patterns in twitching.

DIHALS take note, the Dr also said he has literally never seen it as a first ALS symptom in the absence of clinical weakness. As in never.
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Old 06-12-2017, 07:50 AM #4 (permalink)
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Default Re: Does twitching decrease as mobility decreases?

Mark do you take Riluzole? A subset of PALS find it decreases twitching a lot. Not the primary reason to take it but it is a nice benefit if you happen to fall into that group
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Old 06-12-2017, 08:10 AM #5 (permalink)
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Default Re: Does twitching decrease as mobility decreases?

Thanks for all your quick replies.

My first symptoms were weakness I guess, but in my facial area (I could no longer whistle, and my speech was becoming slurred). I then got the twitching months later. I have constant twitching in my tongue, but can't feel that, it's just visible if I stick out my tongue (looks quite freaky really!!).

I was taking riluzole. They've brought me off it for a couple of weeks, as my blood ALT levels are elevated, so they want to see if it's the riluzole that's causing it. I've been on it for a couple of months though, and it didn't seem to impact the twitching. Maybe it has that affect on some patients?!? The impact of ALS does seem to differ greatly with everyone.

I'm 2 years on since the first symptoms, and this seems to be progressing really slowly (thank god!). The biggest impact is on my speech, but I am still able to talk. I just get tired quickly if I have to talk for too long, as it is hard work. Chewing is also affected, so I have to be careful what I eat ;-/

Mark.
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Old 06-12-2017, 08:56 AM #6 (permalink)
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Default Re: Does twitching decrease as mobility decreases?

Yes the riluzole thing seems to happen to only some PALS sorry you don't seem to be one!

Slow is great. May it continue so
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Old 06-12-2017, 09:32 AM #7 (permalink)
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Default Re: Does twitching decrease as mobility decreases?

The twitching I experienced went like this. I first noticed both cramping and twitching in my left foot. I had sprained my left ankle about 18 months earlier and fallen on a run about 9 months earlier and recovered from both. At that point I did not perceive any weakness anywhere. The twitching spread, over a period of three months to my left calf. This was and still is constant. During the next six months, it spread to my right foot, right calf, both thighs and occasionally to buttocks. At this point I could still easily walk on my toes and heels and run up a flight of stairs but the EMG showed chronic and active changes in both arms and legs. At one point my right eye twitched for several months straight, then went away.

Today, I have clinical weakness in both legs, back, trunk, hands but I can still move all these limbs. The twitching is everywhere but only in my legs and feet constantly. It comes and goes in the other places and is easily picked up by EMG or even visual. Since I gained weight it's harder to see some of the muscles twitch because I'm not real lean like I was several years ago.

It gets much worse after having caffeine, exercising, and times during stress.

It seems to get a little better after a hot shower, rubbing with magnesium oil and coconut oil. I do take a lot of magnesium to keep regular and to help with a benign heart arrhythmia (at least 1,200 mg a day.)
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Old 06-12-2017, 09:53 AM #8 (permalink)
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Default Re: Does twitching decrease as mobility decreases?

Hi Kim

Thanks for your response, your symptoms do appear a lot like mine. I do drink coffee, so maybe I need to switch to decaf. I also find that my twitching is a lot worse after exercise, and also if I get stressed (which is difficult to avoid when you've been told you have ALS). I will try increasing my magnesium intake and see if that helps.

You say you can still move all of your limbs. Are you still able to walk and use your hands?


Regards

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Old 06-12-2017, 12:50 PM #9 (permalink)
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Default Re: Does twitching decrease as mobility decreases?

Hi Kim,

Apologies, I've just re-read my response to your post, and my last question was a little direct I'm sorry.

My diagnosis is still very new. At the moment I am trying to piece everything together and get an idea of what I can expect going forward (hence trying to observe how it has affected others), but this disease seems to be very 'random' in how it progresses. Apart from the twitching, cramping and speech, I feel completely fine. I walked 5 miles on Friday of last week with no issue, and it's hard to contemplate that at some stage this mobility is likely to be taken away from me. It is very scary, although I'm sure lots of people on here have been through the same process ;-(

Mark.
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Old 06-12-2017, 01:20 PM #10 (permalink)
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I find my fasiculations increase when I eat sugar or high glycemic foods.
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Old 06-12-2017, 01:29 PM #11 (permalink)
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Default Re: Mark in the UK

Really! That's interesting.

I guess there is some science behind that, as these foods will provide more energy into the muscle, and potentially make the twitching stronger... that's another one for me to try on my quest for a good nights sleep

Thanks for all the useful and interesting tips!!

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Old 06-18-2017, 07:56 AM #12 (permalink)
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Default Re: Mark in the UK

Hi Mark, first let me say I am sorry to have to welcome you here. Your symptoms sound a lot like mine. It was around 18 months for me with just speech issues. Then swallowing started getting worse. It has been two years now and while I can still eat, it is becoming more difficult and taking a lot longer. I have lost 35 lbs over the last 6 months due to getting tired of eating so slow so I just didn't eat much. I am weaker but still walk my dog for an hour each day and play golf. I do find it is taking longer to recover after these ventures. I had a feeding tube put in week before last and can already feel my energy returning as I am getting water and nutrition again. Still have twitching in primarily my legs but don't pay much attention to them anymore. They definitely get worse after exercise for me. I had a lot of cramping early on especially in bed at night but I think a lot of it was due to dehydration.
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Old 06-18-2017, 09:10 AM #13 (permalink)
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Mark,

Sorry it took me so long to see your questions. You can always be direct with me. I'll share anything that might help you.

Just remember that this rotten disease is different in everybody.

Last September (one year after diagnosis) I was walking about a mile a day and had no trouble getting around. All four limbs still fairly strong, even on clinical exam. I fell and sprained my right ankle. For the next six months I had to use a wheelchair for everything except getting around my condo. My right ankle is probably 75% recovered but is still weak and the left one is weak, too. It hurts to walk most of the time. I can still walk back and forth in the condo and have pretty good grip strength in both hands. I can type but see that some of my fine motor skills aren't what they used to be. I have atrophy in calves and hands, shoulders, arms. So, after the injury, some of my mobility came back but nowhere near what it was before the fall.

I can drive and park in disabled parking, then walk inside a store and use the cart as a walker. Lately, I notice my knees and ankles are getting weaker, harder to balance, and I have a lot of pain in my knees and ankles. The twitches in my feet have made it impossible to get a pedicure. My toes and feet just keep jerking and moving. I found that I must wear flat, wide sneakers with padded socks to walk comfortably.

I hope my ramblings help you. Feel free to ask away!
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Old 06-19-2017, 03:18 PM #14 (permalink)
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Default Re: Mark in the UK

HI DaChief and Kim,

Thank you both for you support and sharing your experiences with me. Fortunately for me, the only issues that I appear to have at the moment are speech (which is my primary problem - especially when I'm tired), and chewing (I can chew, but it gets tiring). At the moment, even though chewing is hard work, my love of food is overcoming the fatigue, so I haven't lost any weight. I do finish my food 20 minutes or so after everyone else in my house, whereas before I developed MND I used to be the first to finish! Swallowing is not too bad, and I can still swallow normal fluids and food, although sometimes I feel like I have a lump in my throat when I swallow, and it seems to create trapped air in my chest, which is uncomfortable.

WIth regards my limbs, I feel that my left food drops quickly when walking, especially down hill, however I can still walk for miles. I have been to a blues festival in a small village this weekend, and have walked around 15 miles whilst I was there (and drank large quantities of beer!).. Alcohol makes the cramping a lot worse (I'm a glutton for punishment), which I'm assuming is down to dehydration. I have started drinking water with my beer when I'm out now, to reduce the dehydration. It seems to help.

By the sound of it keeping moving as much as possible is the key. After speaking to lots of people, I get the impression that we should do as much as possible until the time comes when we just can't manage it any more. That is my plan now. Positive mental attitude, and cross each bridge as I come to it!

Thanks again for all of your support!

Mark.
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