So worried, grateful of any information. Thank you

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Helen212

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Hello, apologies for my post but I’m just so worried.

about 6 weeks ago I spoke to Dr about some odd symptoms.

a feeling of pressing in throat that didn’t bother me much. She suspected silent reflux and gave me omeprazole

An odd vibration feeling which goes through my left side of chest when I get up. When I breathe in. She didn’t seem worried.

pain in fingers of right hand in morning very stiff in mid knuckles but better after stretching out. She thought a bit of arthiritis perhaps.

two weeks ago things changed and I’m concerned.

I noticed a slight twitch in left thumb, two days later I start having twitching literally all over my body mainly at rest when wake up in morning and when I’m sitting. They are particularly bad in left side of back and front same area. I get them in sides of feet, soles, side of ankles, buttocks, backs of arms. Even intimate area.

worryingly when I yawn left side of my chin goes stiff and lots of twitching in left eye, neck and throat. I feel as though I’m lisping a bit and s’s are harder to sound out. I feel my voice projection is lacking. My tongue is completely scalloped around edges by my teeth. My Dr hasn’t seen this as I only noticed this last night.
I’m also experiencing post nasal drip over the last 4 months which is something I’ve never had in my life before.

Both sets of fingers in both knuckles are now stiff each morning and evening and this is worsening quickly.

I get actual kind of flinch type twitches too where whole finger moves/jolts also get this in shoulders and other areas.

Above my left knee has caused me to stumble a few times as it seems to lose power.

I’m just so worried. I was reassured when I read that fascinations don’t normally occur body wide but I’m so concerned with the other stuff too.

Dr did some bloods and all were fine I was hoping they would just show some deficiency somewhere. I spoke on zoom call with a neurologist, but at this time I hadn’t really mentioned the throat/ tongue worries as it just all seemed so ridiculous with explaining my whole body twitches.

He arranged an emg for Wednesday. Should I try and speak to him before regarding my tongue/facial worries incase the emg isn’t done in correct places?? Or will I be able to request this of Dr performing emg.

I’m so grateful for any support/information and I hope my post doesn’t appear insensitive in any way.

Would all these symptoms really have just come on within a couple of months?


Many thanks

Helen
 

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Hi Helen,
I can certainly see this has you very anxious.
I can assure you that the person doing the EMG is completely trained in what parts of the body to place needles into and they may not be the places you think, so don't worry on that score.

Your symptoms really don't raise any concern regarding ALS, and I think you know that as you will have read the post I'm linking to here already.

Please look after yourself until you have the EMG and let us know the results.

If you have further concerns you should raise them with your doctor certainly.

 

lgelb

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The EMG protocol is not likely to change, but you can drop the neuro a note or mention your concerns to the EMG examiner to ensure that you are prepared to accept the results. I think you know that you are not describing ALS.

Best,
Laurie
 

Helen212

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Thank you both for your replies, appreciate it very much.

I will try to speak to Dr today regarding the concerns.
 

Helen212

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Thank you for responses very much appreciated.

I haven’t had actual results however Dr who did the EMG said he was not concerned.

I’ve read a thread about ‘vibrations’ on here which really resonates with me where Rose spoke of vibration through left chest, scalloped tongue and stiff fingers prior to diagnosis although twitching started months after.

So worried movement in tongue is getting worse and swallowing is feeling difficult now too.

Just feel stuck
kind Wishes to all
 

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To what thread are you referring? I don't see a "Rose" in the context you mention.

If the EMG is normal in the context of the diverse, widespread feelings you are having, ALS is off the table. The feelings you mention as well as those you cite from other sources are subjective. A neurologist is trained to elicit objective evidence of weakness, stiffness, abnormal reflexes, and impaired motor function if/as those exist. Even then, in ALS, we would see EMG findings that synched up and supported motor neuron disease. So adding new issues to your posts won't change the fact that neither of these bodies of evidence seem applicable in your case -- a very good thing.

I would go back to your internist and discuss possible roots of your feelings. You might also keep a symptom diary and look for diet, hydration, exercise, stress/anxiety, positioning (bed/chair/couch/car), and other factors that can be leveraged to reduce these feelings and feel more healthy overall.
 

Helen212

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Thank you

I am trying to arrange to be actually examined by a neurologist. All I had was a phone call which was very difficult as line was bad.

the thread was an old one but just so many similarities. I’m thinking as my twitching is so widespread the EMG would have indicated if something was going on.

Trying to speak to Dr today to see if NHS neurology apt could be bought forward.

Thank you very much for your reply. I am indeed noting down these things and will add more as per your suggestion.
 

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Twitching means nothing, I think you might have seen this said thousands of times here.
It's hard to get through your anxiety I understand. You have had a clean EMG, so really we are not going to be able to add anything more.
Neurology appointments often are allocated according to the priority of need.
You don't demonstrate anything that would indicate you should be seen ahead of people with serious conditions, so try and take the delay as a positive, rather than try to jump the queue.

If your anxiety is this high, talk openly with your doctor about it so that you can receive help dealing with that.
 

Helen212

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Thank you so much for replies.

I’m concerned my speech is different as a couple of people have now noticed the pronounced s’s. I did however see a neurologist face to face and he tested reflexes etc and other quick tests and said all seemed


I have an odd involuntary swallow going on now when I wake up which is really odd, twitches on tongue continue as well as general twitches and jerks.


my hands have gotten so weak left first then right but only over last 6 weeks. Calf and foot cramps whilst mild are almost always present.

Clumsily constantly dropping things it’s all just so odd.

Just not sure what to do next. Tongue twitching is so scary, my swallowing is odd too.

I wake up every morning. Strange vibration through chest and then as soon as I change position twitching begins. Sides of feet. Sides of calfs, throat back and particularly left side of chest.

wishing best to all, I can’t continue like this much longer 5th week of twitching now, it doesn’t seem to be going anywhere soon
 

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You can't keep coming here to discuss however as it isn't helping you, nor getting a diagnosis.
Please go see your doctor, that is the thing to do next.
 

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Hi Helen-

As Tillie says, this forum is not able to provide you what you need. You must keep working with your doctors. While we are certainly sympathetic, the purpose in this subforum is to provide basic information (read here: Read Before Posting ). Once you've received multiple replies that to the people here it doesn't sound like ALS it is time to stop trying to convince folk here and start addressing this with your doctors. If anxiety about your symptoms is affecting your day to day activities while you wait for answers, it might be a good idea to address this as well. This is not a dismissal of your symptoms but a recommendation you seek qualified support, as the folk here can not do this for you.
 

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I have closed this thread to help you focus on the anxiety, Helen. As others have said, adding symptoms that will not make ALS more likely is not helpful for you or anyone. Please seek the insights from professonals that know your health and that can help you feel better.

Best,
Laurie
 
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