Terrified

Edinburgh21

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Hi

I lost my mum to MND/ALS a few years ago, so am always hyper aware to any potential symptoms.

Over the last two weeks, I have been experiencing muscle twitches, mostly on my left calf but also on the right calf, lower left thigh, left arm and next to the left eye.

I have also been sore behind both kneecaps for a few weeks and currently have aches in my thigh, although that could be due to exercise.

My knee reflex seems normal, but I tripped on the top step just now which greatly alarmed me! If I ever drop anything I am also worried too.

I have had a few sleepless nights now so any advice would be gratefully received.

Kind regards

And twitches in feet too!
 

affected

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What did your doctor say?
I'm so very sorry about your mum. If she is the only person in your family, there is no reason to think it is genetic. If it is, you are not likely to develop symptoms until you are around the age she was, so you have many years to keep living yet.
Please see a doctor and move forward with medical advice.
 

lgelb

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Very sorry about your mom. Hyperawareness can elicit all the things you mention and more. So I would presume you're well and see how far that takes you. Of course, as always, if something interferes with activities, you should see your GP.

Stretching before exercise and cooling down afterwards is always advised. De-stressing and focusing on other things may entail pastimes or work you enjoy already, and/or helping others who are less fortunate.

Best,
Laurie
 

Edinburgh21

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Thank you for your kind replies and apologies for not replying sooner.

Got an appointment with a numerologist in 2 weeks.

In the meantime since my last posting, I have been having some frankly alarming symptoms:

Permanent tremor/fibrillation in legs, trunk, arms and shoulders.

Aches, cramps and pains in arms, legs and joints, these seem to come and go but especially occur even after only minor exertions such as cooking and a short walk. Sometimes it feels like my muscles are in a vice!

Feel like my left calf muscle does not work at all now (not sure how to confirm this).

Clicking joints every time I move.

Weakness (unsure if ‘clinical’ or not)

Some weight loss.

Sleep apnea- I wake every morning in the early hours and when I doze it’s like i’m hallucinating (lack of oxygen?) i’m worried if my diaphragm is working correctly now. Would it have any impact on bowel, stomach and bladder as well as breathing?

I would appreciate any further thoughts, my symptoms seem to be progressing very quickly and I am very worried.

Many thanks
 

Nikki J

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Can you point your foot? Can you curl your toes? Those are 2 functions of the calf muscle.

you can NOT feel fibrillations. Period.

waking during the night is not enough to say you have sleep apnea and hallucinations are not a cardinal sign either. If you are truly hallucinating call your doctor urgently.

ALS does not start all over the body.

what can you not do? you say you are weak.
you will see the neurologist in 2 weeks Be sure to ask all your questions there
 

Edinburgh21

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Hi Nikki thank you for your reply. Yes I can do both of those things with my toes.

Maybe fibrillations was the wrong choice of word, but it feels like constant buzzing/pulsing in these areas. Could this be a precursor to any failings?

Weakness so far just seems to be finding day to day things a bit more difficult at present, such as feeding, drinking etc and fatigue. I understand it’s not failure- however it has definitely been getting worse over last few weeks.

My balance and co-ordination also seems to be much poorer recently.

I’m sorry for asking these questions, It’s just everything is seeming to happen so quickly- weight loss, sleep and/or breathing problems, aches/pains, fatigue.

Thank you again
 

Bestfriends14

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I am so sorry that you lost your mum to this beast of a disease, however, no, no, no, and many more no's, none of your symptoms point to ALS. You should be elated that many folks on here have told you the very same thing, yet you are not. Will you believe the neurologist when they tell you the same thing? I am doubtful that you will. I am sure that whatever is going on withy you is frustrating, but you should know that you can strike ALS off the list, thus allowing you to travel a diagnostic path with at least one less worry.

Do let us know what the neuro says in a couple of weeks. I am confident they will tell you what you have been told here, so updating the forum in with that news is always helpful to others. Until then, take good care.
 

Nikki J

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Do a search for the word buzzing. See how often it shows up in CIHALS posts. Very common. I don’t think any of those people got diagnosed with ALS
 

affected

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If you start off by reading through this really carefully, you will find the answers to your questions.
Please work with your doctors and let us know the result.

That post allows us to concentrate on our terminally ill members, rather than having to answer the same things constantly. I hope you understand that you have had replies from some of our most senior members now. All the best.
 

Edinburgh21

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Hi all, it wasn’t good news i’m afraid.

Very rapid onset so won’t have time to get a proper diagnosis. Still walking and talking so seems a strange manifestation.
 

Nikki J

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What do you mean? Did you have an emg? If you are walking and talking you have time for a proper diagnostic workup. My sister was diagnosed in 4 days from presentation
 

Edinburgh21

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Nuero did testing reflexes, physical exam etc- no emg as he stated none required.

Said all my symptoms could be explained away by other means.

2 days later in hospital! Highly likely MND.
 

Nikki J

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I remain confused. Someone in the hospital says you “ likely” have MND. Are they a neuromuscular specialist? A general neurologist? What tests have you had? What are they basing this on? ALS doesn’t go from normal exam to diagnosed without testing / no time for testing in 48 hours. If your symptoms developed so fast they should be looking at other things and doing multiple tests not saying it is mnd but we aren’t going to diagnose it properly. You are obviously scared and understandably so but I will tell you the last person I encountered ( not here) that was told probably ALS in the hospital did not have it when he saw the specialist. If it wasn’t a neuromuscular specialist insist on seeing one and insist on tests. whatever your symptoms are they might be treatable!
 
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