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Daphne

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Joined
Dec 23, 2009
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30
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Loved one DX
Country
US
State
Missouri
City
St. Louis
Hi All,

I've visited this site many times but I've never before posted. Currently, my brother is in the later stages of ALS, and I am on a mission to discover whether anxiety over him is causing my strange symptoms (yes, I just started therapy and have an anti-anxiety drug if I need it), or maybe they're a side effect of a beta blocker I was on for three years (which I quit, but symptoms persist), or maybe I, too, have ALS.

I notice a common theme that those with real ALS often poo-poo the fears of sick people, and I've probably already commented about this problem before, and I've probably already said that I understand both sides of it. So with this knowledge, I ask my question with trepidation...

Did anyone's ALS present with one main symptoms: muscle twitches? For my brother, it was frequent, painful muscle cramps (for 7 years, he says!) and then eventual left hand cramping and weakness.

Like so many sufferers out there, I have been experiencing muscle twitches, in my case for 8 months now -- everywhere: limbs, trunk, face, mouth. I have occasional almost-cramps in muscles. The only consistent thing I can identify is that the twitches seem to be an inflammatory response, ie. when I drive, my right knee area has twitches, and when I use the computer mouse, my right arm twitches, etc. Even pressure on an area can cause this angry muscle response. The twitches are rapid-fire and painless, usually of short duration but sometimes lasting hours. And also, when I am ill from a virus or some other illness, my whole body flares up, twitching all over.

Finally my GP is listening to me and is concerned. She's already tested me for thyroid and nutritional problems (all normal). Now she's sending me in for nerve conduction tests, and she requested that a neurologist be present. I had recently learned to just live with it, and my anxiety had become reduced, but her alarm has me anxious again.

I have no paralysis or muscle weakness, but a muscle is easily fatigued with use. I'm 44. My brother is almost 50.
Any thoughts for me?
 
I guess just posting my worries has made me feel better. I think this forum is a great resource, and usually after I visit it, I feel morfe optimistic. When I read and read and read, over and over, that ALS usually presents as weakness, I feel grateful. It gives me courage to put my symptoms out of my mind and move on.
 
Did anyone's ALS present with one main symptoms: muscle twitches? For my brother, it was frequent, painful muscle cramps (for 7 years, he says!) and then eventual left hand cramping and weakness.

No, not me. My first symptom was muscle weakness in one hand, specifically in the muscles controlling the movement of my thumb. I didn't even realize that I was having fasciculations until my first neuro pointed them out to me -- that's how mild they were in the early days. As the disease progressed and weakness became more significant and more widespread, the twitches became noticeable to me.

Any thoughts for me?

Sounds like your GP is being very conservative and thorough in her methods. I wouldn't assume that she thinks anything bad is going on from what she's doing or requesting. She appears to be covering all the bases so that she gives you a solid answer the first time.

And, for the record, your symptoms don't sound like ALS to me, although I can certainly understand why you might worry about it. Widespread fasciculations don't usually start until much later in the disease process, and reduced muscle endurance can be caused by a lot of other conditions. Finally, unless there are other cases of ALS in your family besides your brother or your brother has tested positive for one of the genetically linked variants of ALS, you're at no higher risk of having ALS than any other member of the general public.

Honest opinion -- no pooh-poohing.

Good luck with your diagnostic process. I hope you get the answers you are seeking.
 
Daphne , how horrible for you. I can fully understand your concerns, with your brother having ALS. I realise you have heard it all before but I thought I might add something to help you feel optimistic.

My husband is 49 and is a Neurologist, in fact the head of neurology where I live. Last week we were sitting outside enjoying the sun and I started asking him a few questions about things on this forum. I was asking about all the hysteria in USA over twitching, because I really cant get my head around a normal phenomenon, ending up with a huge number of unneccesary EMG.s (apart from the money the drs get for the test).

He said that 4 years ago he had widespread fasciculations that lasted for 2 years before they just faded away. He did not think it at all important, and had never even mentioned it to me, even during the scare that I may have ALS. NOW if a neurologist pushes it aside with a HOHUM, then everyone without other indications of a problem such as weakness, should do the same. Well thats my opinion.

I had weakness before my twitching, but still pass my twitches off as nothing as I do not have EMG evidence of LMN signs. They are therefore benign and are dismissed !

After you have a review, I am sure your mind will be at rest. Just remember that you need to trust your Dr when he gives you the EMG report. Dont disregard it as so many do.

Best of luck
Aly
 
Hi,
Being a non-ALS twitcher myself for more than 3,5 years, I can just tell what you probably will hear: its very rare to have fasciculations before weakness and if so, this phase is quite short (few months as I remember correctly from textbook ALS: Synthesis of research). I believe that its just due to stress you are going through with the disease your brother has.
On the other side, cramps are recognized to often preceed the other symptoms, especially in leg onset. But 7 years, gosh there is no rule I can see with this disease.
 
Thank you for your responses. I promise to post again after my tests.
 
I wanted to update you on the nerve conduction test. They picked up one abnormality, an irritated nerve that's associated with the spine in the L4 spot. The neurologist says I probably also have BFS. While it's nice to be validated (yep, I'm twitching and cramping), it's a relief that I have no muscle weakness and nothing that suggests ALS. Our bodies are such complex things. How is it that I have no back or muscle pain, yet my toes, fingers, calves, and thighs cramp, and my tongue twitches? So bizarre. Back to focusing on my brother, who can no longer rock himself out of a chair or even walk across the room.
Take care, everyone, and thanks for your continued patience. Every now and then, the horror of my brother's disease hits me. I wish they'd find a cure...
 
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