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Bella26

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Hey Everyone,

I'm 26 years old and always been healthy until February this year when I started getting twitches in my fingers and toes (mostly at night when relaxed). I will admit I was going through A LOT of stress and I figured that was the cause.

Then came the hand tremors... shaky hands all day long made much worse when I was hot, exerted myself, or used my hands a lot. This prompted a visit to my GP who sent me to a neurologist. Clean MRI brain/cervical spine. Blood tests normal except high calcium(no cause found). I was told it was anxiety and nothing more.

Soon after, the twitching was body wide (EVERYWHERE!) I also had brain fog and some dizziness/vertigo which my GP also dismissed as stress induced. I felt better in May - the twitching and even hand tremors subsided and my vertigo was finally down to just about one or two days/month instead of everyday. I felt huge relief and back to myself again until last week. Almost 5 months of feeling relatively normal!

I decided to start exercising again this month - what a mistake! The twitching is worse than ever and it is everywhere again. The hand tremors are also worse. My little finger on both sides is very stiff and rigid especially in the morning. My hands feel slightly clumsy to me and I am constantly dropping my phone. I feel weaker everywhere - a general feeling of weakness and fatigue. My muscles(legs and arms) shake if I try to use them or hold a position. This is all nonstop every day for the past week since I worked out. I didn't have any trouble with the workout however. I have taken slight comfort in the fact that I've had some tingling/vibrations in my hands and feet/scalp and tip of nose as I have read that these aren't symptoms of ALS.

So I am confused! Should I see another neurologist? Ask for an EMG? Does ALS sound remotely like this? I have read the stickies and I'm still confused because in some ways yes and in some ways no. I know the vertigo isn't a symptom but everything else seems neuromuscular to me. I am honestly so interested in your opinions since you all probably know better than a Doctor what its all about. Can ALS go away for 5 months and return this severe due to a workout? Does it affect the entire body with general fatigue and weakness like this? Please respond! This was long and confusing and I apologize but my God am I stressed right now!

Thank you to anyone that reads this!

Isabella
 

Toto's Dorothy

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Bella, als symp toms do not come and go. When you had your cal cium checked, did they also check your pth levels, vitamin d and b 12? Many of your ksymp toms are sensory and points away from als. Which is a good thing. Call your pcp back up and ask to be seen again. Tell him what you are exper iencing and let him decide what the next move is.

Good luck,
 

ottawa girl

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Hi Isabella,

Sorry for your ordeal. I can tell you, from limited knowledge, that ALS does not cause tingling. I can only speak to my own experience- and tell you NO- ALS doesn't come and go. (I have good and bad days- but nothing like you describe- mine are tired days and less tired days).

You may want to visit your GP again - and bring a copy of your post. While anxiety, as you know, can & does cause an array of symptoms, anxiety shouldn't (in my opinion) be the only consideration. It could be a simple thing- for example- dehydration and exercise don't mix (I recall from my running days), vitamin deficiency, fatigue, hormonal changes etc

Nothing you describe is even close to the symptoms I've had with ALS. Go back to your GP for another consultation.

Good luck to you.
 

Bella26

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Thank you Toto, for taking the time to reply :)

Can you tell me which symptoms are sensory? I am really trying to understand all of this but there is so much conflicting information on the internet.

Interesting that you ask - calcium was high at 11.3, my b12 was low at 190, vit d was low at 23 and pth was in range at 43. My GP says none of these thing can cause my symptoms unless they are drastically out of range.


Thanks again,

Bella!
 

Bella26

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Hi Ottawa girl! Thanks for replying!

I so wish I was in Canada right now but have been living in the Caribbean and the health care is truly scary! Doctors are too lazy to take you seriously! Considering going back to Toronto just to see a Doctor I am going so crazy!

I do feel better that I have the tingling as well - but the twitching and stiff fingers are scaring me silly. I also don't understand if shaky muscles when in use qualifies as weakness or not.

I will definitely go back to my GP as this is on my mind 24/7.

Thanks again,

Bella :)
 

ottawa girl

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No you don't wish you were here- it's getting chilly - thank goodness the trees are so beautiful. You undoubtedly have beaches and teal coloured seas.

Don't know which island you're on, but I understand St. George's Medical School (American University) in St Maarten is pretty good. Maybe that's close to you? They may have a clinic there- but not sure.

Try to relax- if you can.
 

laurel

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Isabella I am sorry that you are here and feeling so anxious. From years of reading similar concerns on this thread, nothing raises a red flag to me. Perhaps you could read about Benign Fasciculation Syndrome and see if anything there seems to fit. When a person is as anxious as you are, a second opinion with a reputable neurologist is certainly a reasonable thing to do as it likely will greatly reassure you. All the best to you.
Laurel
 

Luke

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Hi Isabella,

I'm sorry you're having these health issues. While I don't have any specific advice about the cause of your symptoms, it sounds like you're on the right track in seeking medical help. There are thousands of ailments, many minor and / or treatable, that could cause those issues, so hang in there and try not to let the fear get the best of you. You sound like a reasonable, intelligent person so I know you'll get through this just fine. Keep us posted.
 

Toto's Dorothy

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Bella, I have to agree with O girl. I would trade you my healthcare; everything is free until next year, to sit on the sandy beaches anytime. Your te st results are nothing al arming. I was just checking to see if any of these were included. Since your pth levels were normal, although your calcium was a tad high, that is good news. Your B-12 is a wee bit under. If it were lower, your doc tor would have explained what symp toms this can cause. (Numbness and tingling can be caused by low B 12.)

Since you are still concerned, go to your gp and ask for another referral. This will relieve any fears. After your appoi ntment, please come back and let us know.

Hint; my pth levels were at 62, calcium at 13.1, B-12 at 138 and vitamin D at 10.1. I take B-12 shots, and 50,000 units of D every
week. And this has nothing to do with als.

Good luck
 

notme

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Tingling and the like are sensory, thus, not ALS. But, that said, if I was having issues with vertigo and numbness and tingling, I'd persist in seeking answers.

And, yes, B-12 being low can cause some of those issues, per my neuro. We're you also tested to see not only what your number was, but also how you absorb b-12?

These are not ALS symptoms, luckily, but it sounds like something could be going on unless you seriously overdid it with your exercise routine.

Do you have weakness that comes and goes? Feels better after rest!
 

Bella26

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Hi Everyone!

I went back to my GP - he seems to think I'm over reacting but did agree to send me for an EMG. My question is - is there a different kind of EMG? He said that it would be something on the surface of my muscles and not involve any needles. If I'm going for one I'd like to get the right thing done that can rule out ALS, etc and not still be wondering about it after!

He did a clinical "neuro" exam and said that my knee reflexes were a little brisk but I was clearly nervous and that may be why. Can brisk reflexes be caused by feeling nervous/anxious?

notme - I had these same exact symptoms about 4/5 months ago - weak/fatigued feeling everywhere, twitching, tremors, muscles shake when held in position...then I had a few months of feeling much better.. then I exercised - and they are back but worse! This time my hands feel so clumsy and weak and that has me especially worried. My little fingers are also so stiff and rigid and it wont go away. I was never tested further regarding the low B12 but had 4 shots and take a sublingual everyday.

Toto - I was hoping my elevated calcium had something to do with it. I read that if your calcium is elevated your pth level should be close to zero if it's functioning correctly. So a high-normal pth with elevated calcium still indicates hyperparathyroidism. Then I saw that hyperparathyroidism can mimic als or cause neurological symptoms. Can you tell I have been reading way too far into this? :) Just looking for anything to be the cause of my symptoms other than something serious I guess.


Thank you so much for listening and replying everyone :)

Bella
 

notme

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The good news is the fact that your symptoms went away and came back point away from ALS. if they get worse with exertion, this does as well.


Lots have brisk reflexes. See what a neuro says.

There is an EMG without needles, yes. Wright, our EMG expert here, told me about it a while back. They are usually accompanied by a NCV.

Good luck.
 

Bella26

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Hey guys.... I think I've gone off the deep end. I cannot stop worrying about this! I feel like I'm noticing atrophy all of a sudden! Can it become noticeable in just a week? How does it appear when it first starts? Is the entire muscle smaller or does it dent? I cannot believe I went from feeling fine and strong 2 weeks ago to this!
 

notme

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You would have profound loss of function before atrophy. It doesn't happen overnight.

It's entirely possible this is going to be something in your blood levels somewhere, or that you simply overdid it with the exercise. There is a huge difference between being weak and a feeling of weakness, believe me.

I'd love to be able to be able to pick up a mug of diet coke again or open a bottle. If you're weak, you'd have no doubt. Let your GP sort you out.
 
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