Wits end with symptoms

villa07

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Good afternoon

I have been having some horrible symptoms that point to ALS and, having read and observed this forum over the last few weeks and tried hard not to register, I’ve caved as I’m frantic with worry

I started in April with tight cramping hamstrings - they would go into spasm every so often. I know have very odd stiff sensations in my fingers on both hands but the absolute worst symptom of all has to be calf twitching. It’s 24/7 fasics in both calves and feet with intermittent fasics in biceps in both arms, chest, thigh - you name it, im twitching.

I’ve got very odd walking sensation, almost like my right foot is leaning into one side and I’m scared this is the sign of weakness and muscle loss.

I feel drained, tired and fed up with how this is all making me feel.

I am clearly hugely respectful of you all and I know the ALS rabbit hole is a dark one but wondered if any of my symptoms were familiar? The information on the internet is a scary, frightening world.

With Kind Regards
 
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ShiftKicker

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Hello-

We ask that people read here first: Read Before Posting. One of the first things recommended in that link is a visit to your doctor. A medical professional can conduct a physical exam and provide you with feedback based on their observations. In the link you will also read that twitching is non specific and can mean many things or nothing at all. You report odd sensations and feeling tired. Again, nonspecific. Please read the link carefully and have a visit with your doctor for reassurance and possible solutions. ALS is a disease of failure and you do not report such.

Take care
 

villa07

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In your experience and knowledge does ALS tend to start bilaterally? For example could you have symptoms in your left hand and right ankle simultaneously?
 

Nikki J

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No. That would be highly unusual to say the least. Again see a doctor
 

affected

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Please read the post Shiftkicker kindly linked for you very carefully, read it twice.
Then see your doctor. You don't even begin to describe ALS so getting medical attention fast means you can return to full health again quickly.
 

villa07

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Don’t have appointment for another two weeks but still suffering. Fasics are wild in both calves, tight feeling around knees (terrified this is weakness starting) right hand is awkward and lost dexterity. Could I ask please whether ALS can start in both right leg and right arm simultaneously please?
 

ShiftKicker

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Hi, you already asked that and received an answer. See Nikki's reply to you above. If you have further questions, please save them for your doctor's appt in a couple weeks. They can take you through their examination, their observations and their thoughts on next steps. At this point, you are speculating and asking questions that are solely focused on ALS and not the broader issue of what your symptoms may actually indicate.

Please take care.
 

affected

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Please let us know how your appointment goes
Answer - not something we would expect at all.
 

villa07

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Doctor is referring me. Now have twitches in left shoulder, right thigh, both calves, buttocks. I am absolutely terrified
 

Bestfriends14

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Twitches in isolation mean nothing. You can choose to be terrified (yes, it is a choice), or take a bit of comfort by seeing the optimistic side of things that no one here sees ALS in what you describe. Seriously, twitching? I twitch all the time and I don't have ALS. If you are unable to stop your thoughts from controlling you, I suggest talking to you GP about a short term trial of medication to calm you until your appointment.

Please, update after your appointment; not with every new feeling you have. Remember your audience here-folks who actually do have ALS and their caregivers. You are neither. Further questions and/or statements should be brought to your doc.

Take good care
 

affected

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Twitching means nothing, we have tried to reassure you on that one.
You don't say who you have been referred to. If a neurologist, well that is good as they diagnose a host of hundreds of diseases and injuries. Whatever is going on it is good that you are seeing a doctor.
Do let us know the diagnosis. All the best.
 

villa07

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I wanted to close the loop on this. Saw neurologist today, completely normal thorough exam. Laid bare my fears and she said absolutely no evidence of MND/ALS and more likely benign fasics syndrome although she couldn’t illicit any twitching when she checked (!) like you have all said, the disease simply does not start this way she said they look for weakness and muscle wasting neither of which I have. She has recommended going back to the GP for blood tests for thyroid etc and in the meantime she suspects my stiffness and twitching is a result of something spinal/disc related. She did offer an EMG but think that was more for reassurance- she did not feel it necessary after a completely clear neuro clinical test.

Since May I have spent countless hours searching symptoms on the internet when I should have been with my family. I’ve also darkened the door of the terminally ill desperate to get reassurance - something I deeply regret and will make a donation.

To anyone that comes across this after an internet search, to anyone reading this in a state of absolute panic, please don’t go through the same mental torture as I did. Be rational, see your GP and don’t fall down the rabbit hole.

To all the care givers and PALS thank you for your support, wise words and rationality
 
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