Advice please

Newy

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Hi.

I will only write once for advice so not to clog up and let you know once tests complete, but would appreciate advice please.

Around new year I had some twitching in my left hand that was enough to move my finger. This went away after a couple of days. A couple of weeks later returned but this time in my hand again and left foot, particularly my toes.

Since then my little finger aches and doesnt seem right and have nerve like feelings in side of wrist and finger.

My left foot feels like a dead weight and aches up the front of my foot up to shin, same with right.

Then, my right hand got weak and my thumb shakes and doesn’t always do as it’s told. I feel lots of pain between thumb and finger like carpel tunnel and not aches up near bicep. Sometimes bicep is constantly gripped by like a nerve spasm.

Ive never lost grip, tripped, fell, although feeling weak as time goes on, I can do everything at the moment normally.

Muscle twitches are returning and seem to be spreading around.

I went to A&E today as my anxiety was through the roof. There they did Central nervous system test and said everything was normal and strong but to see neuro for test. This is booked and CT SCAN and MRI clear.

Also, I’ve noticed that my tongue is extremally dry constantly and feels enlarged in my mouth and although I am aware of my speech others tell me it’s fine.

Can I please have your thoughts as seem a random set of symptoms.

Thank you all.
 

lgelb

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If you've read the stickies, you know that twitches, aches, numbness and tingling that migrate and come and go argue particularly strongly against ALS and many other serious disorders. I expect that the neuro appointment will be reassuring as regards MND.

Hydration, sleep, stress, allergies and diet can all play a role, even when it comes to the dry tongue (you might try a sugar-free cough drop or mouth spray). The pain on the side of your hand suggests attention to how you rest your arms/hand when working and how you text/type. It is not uncommon for thumbs to not function well when fighting gravity, etc.

Presuming you're at home more than pre-pandemic, even simple things like changing furnace filters and attention to humidity can improve your sleep, which in turn influences your muscles for the rest of your day.

Best,
Laurie
 

Newy

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Hi

Thank you for the reply.

I’ve read stickies thank you and got a lot of worthwhile information. I think I am correct that you wont get tingling in fingers with ALS.
My symptoms feel so real, I can’t eat due to my tongue feeling so enlarged and it’s affecting how I talk because it feels painful in my mouth and under my chin is so painful.

some days it feels like I can feel every nerve in my body brushing against my skin.

totally consumed with worry as symptoms progressing but feels like I have nerves pulling in my hands and feet which I don’t think it’s normal symptoms.

thanks
Lisa
 

Nikki J

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Of course your symptoms are real. You feel what you feel. You are right they don’t sound like ALS. When you go to the neurologist your main question should be what is wrong with me. If you say is this ALS then they can just say no. Try the things Laurie mentioned and try not to worry. I am sure the neuro will say not ALS and hopefully find a way to make you feel better. Good luck
 

Newy

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Thank you both.

I’ve spoken to neurologist and have an EMG booked in. It worries me because since I’m having loads of problems with my tongue, not eating and under my chin feels like it’s pulling and strained and like I can’t breathe properly.

I keep waking up to numb fingers on left hand but feelings come back. Right arm bicep like I got a nerve stuck and arm tight. Thumb grip is weak.

twitches have increased.

I’m also suffering like an off balance feeling with I’m walking - not quite dizziness and makes me conscious on my legs.

Do you think any of this points to ALS ?

thanks again
Lisa x
 

lgelb

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No more so than when you first posted. Stop back by when you have the EMG results, which I'm sure will be reassuring.
 

Newy

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Thanks, I’m no hypochondriac but I’m literally in a mess. I’ve read so much on ALS because I don’t know what else could be making me deteriorate like this.... Ive literally lost strength in both arms and things work sometimes and not others.

Appreciate relies as always :)
 

Newy

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Hi

I’ve had an EMG and they tested everywhere including under my chin and also checked all my reflexes and said everything was as it should be.

First question is I’ve read that EMG is not for picking up Bulbar onset is that right ?

Also,
Could you please tell me if bulbar onset causes you to feel ill, if it hurts ie pulling sensations under chin, tongue feeling of enlargement, oral thrush, feeling sick when trying to eat etc ...

Thanks so much
Lisa
 

Nikki J

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Under the chin is one of the places they can test for bulbar. Any one of several places is considered adequate to detect lmn in bulbar umn disease would have been detected by your doctor during your exam.

and no
 

Newy

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Thanks Nikki...
All advice has been appreciated.

Donations will continue to be made in the hope of finding a cure for this awful disease.
 

Newy

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Hi

Apologies just one more question.

Symptoms:

Tongue feels enlarged
Oral thrush
Under chin feels painful and swollen
Mouth very dry constantly
Not eating - mostly due to tongue sores
Affecting ears - like need to pop
Internal shivers - can feel on face too
Tongue painful
Breathing feels weird like I can’t feel it

Again just seeking advice as desperate for some answers. I had EMG as stated and put 2 needles under chin and did both hands, arms and legs.

All completely normal. Both arms feel ‘weak’ and aching.

Neuro - 2 tel calls and said not an issue for him as all clear.

Had reflexes tested from several docs all normal. Have twitches but not constant and. Around body.

Had MRI and CT scan all normal as well as bloods but B12 low.

Just advice pls and I won’t post again after this so not to clog up.

thanks so much
Lisa
 

Nikki J

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none of this sounds like ALS which is why the neuro said they can’t help you. We can’t either.
I hope you are being treated for the thrush Once that resolves a lot of your symptoms should resolve too. Otherwise talk to your gp and see what they recommend If you don’t know why you got thrush that is an issue to explore. Since you are having difficulty accepting the neuro opinion you might also ask for an anxiety evaluation. Good luck
 

Newy

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Thank you - with weak feelings in my arms and almost not being able to use my thumb I just don’t understand what is happening.

Lisa
 

Nikki J

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That is why you need to work with your doctor. The neuro cleared you and we never thought it was ALS anyway. Whatever is wrong is for your doctor to find. Your answers are not here and there is nothing more we can say.
 

Newy

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Thanks Nikki and I know this isn’t an anxiety forum so for that I am sorry.

symptoms are progressing to me waking up with a tight under foot on left side, my left hand is painful and struggling to hold things with pain which has come out of the blue and tongue and under chin feeling is awful.

I’m so scared re what’s happening as don’t know if that’s spasticity or not !

Thanks so much
 
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