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WallaceUK

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Learn about ALS
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Thanks to anyone reading or replying to my thread. I have been lurking on here for a few months and have restrained myself from posting. Having witnessed the patience and compassion shown by the sites members and my growing concerns, I hope you don’t mind me posting.
I started with fasics/twitching in January 18, first on face then fairly widespread. These have gotten worse with time and now appear in most places. My left leg is the focal point, and almost continuously in my calf muscle.
I had a slight trauma to my left leg in early November, mild subluxation with muscle and possible nerve damage. There is mild pain in my leg, glutes, thigh etc, along with the constant twitching.
I have tried all the supplements, stretches, massage etc, twitching remains.
I have not noticed any obvious weakness or atrophy, I check constantly.
I was diagnosed with Minieres disease (ear problem) in May 17 and use 1.5 mg lorazepam at night to help with tinnitus and sleep.
I have become increasingly concerned with these symptoms and am aware I should see a Doctor. I am however quite terrified of what the diagnosis might be.
I am aware of BFS, but not convinced. Also read all the stickies, numerous times.
I also have a lot of creaking, cracking, popping joints, shoulders, knees, feet etc.
Thank you again if you have read this post. Your comments and insight are greatly appreciated.
 
You mention twitching and pain but no obvious weakness or atrophy. This would not be consistent with ALS. Twitching means nothing. Pain points away from ALS. Absence of muscle function failure points away from ALS.

So you’re likely in the clear. If you have questions/ concerns, start by seeing your primary care physician.
 
A heartfelt thank you for your reply. I have heard and read so many conflicting views regarding twitching, that they really do concern me.
I feel rather than waste people’s time here, I will go and get properly checked out.
Many thanks again and God bless.
 
I had my appointment with my PCP. She seemed very concerned about the twitching. I have blood tests scheduled. If bloods are normal she wants me to see a neuro, she said muscles shouldn’t twitch and this could be due to a neurological problem.
Wasn’t really the news I wanted but wasn’t that surprised.
My left calf twitching continues and now my right leg has started doing the same, this has really scared me. Random twitching continues around my body but definitely mainly now both calfs and sometimes thighs.
Does this sound quite typical for ALS?

I have read so much info that twitching does indeed often start before everything else, I know that this is not the position of this forum but there appears to be a lot of people who have experienced it.

BTW, I am 47.

I’m really worried and would appreciate any responses.

Thank you for Your time.
Wallace.
 
All due respect, your PCP is not a neuromuscular specialist, and PCPs, who are only human, can be alarmed by what they haven't seen, without its being a real medical problem.

Of course, since she wants you to see a neuro, you'll have more information after you see one.

I'm not sure we can comment further since as you point out, we recall no cases here of generalized twitching without impairment or atrophy that have turned up as MND. Wherever/whatever you think you have read otherwise, I would not let that derail your life meanwhile.

Stop back after you have seen the neuro and let us know how it goes.

Best,
Laurie
 
Wallace, as an MD myself, I’ll be blunt here. PCPs know squat about ALS. Please reread my first post; I stand by it. I seriously doubt you have anything to worry about here.

Twitching is common, nonspecific, and meaningless. Up to 70% of normal healthy people have fasciculations. It doesn’t matter if they are body-wide, crazy-fast, or whatever. If you don’t have documented weakness and muscle function failure, you don’t have ALS. Period.

I’m sure the neurologist will conclude the same.
 
Thank you again for taking the time to reply, it really is appreciated. I will wait for the results of my blood test and neuro appointment, sadly this will take several months here in the UK.
I spent the weekend trying to see if I’d missed something re weakness or atrophy, I know I’m not a specialist but apart from a sore shoulder, which I’ve had for years, gets sore if I over extend it but still have full mobility. Mild soreness in legs sometimes, no other obvious problems. I played tennis 3 weeks ago with no issues.
Would the muscle weakness and/or atrophy be obvious to me by now if I had any?
Could the twitching be a sign that the weakness/atrophy is to come?
Apologies for asking more questions, I realise I should ask the neuro but I don’t think I’ll be seeing them for a while.

Thank you,

Wallace.
 
Wallace, if you would like to have a knowledgeable person answer your questions, specifically tailored to your needs and based upon a physical examination, you might wish to see a physiotherapist or osteopathic practitioner. They can assess strength, size and balance and address any direct concerns you may have. They would be better suited to answering your questions than strangers on the internet, and are in a position to assist you with muscular pain.
 
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