Have Atrophy and EMG Scheduled

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BillZgl

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Joined
Jan 31, 2023
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Reason
Learn about ALS
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00/0000
Country
NL
State
AM
City
Amsterdam
Hello everyone, I’m really appreciate what you all doing here and sorry to bother you, but I have couple questions to ask if you don’t mind.

Let me tell you my story shortly first. I’m 30yo male and my symptoms/concerns started about 3 weeks ago with twitching in my left calf. And the day after it spread my right leg and since then I had some other neurological symptoms which I believe not relative with ALS. I had tinglings all over my body, twitching all over my body as well and some leg pains and tinglings on my legs coming from my hips. During that time ( about 2 weeks ago) I realised stiffness in my right hand, when I release my hand my thumb was getting close to index finger and I felt the stiffness on the pinky and ring fingers as well. At that time I also realised an atrophy on my thumb muscles (first it was just my opinion) and I saw GP who realised the atrophy and and weakness in my hand as well. Today I saw the neurologist and she examined me and told me twitches are seem irrelative so far but for the atrophy she scheduled an EMG which will take place on end of March.

I have this strange feeling/ache on my forearm which prevents me to control my hand properly, I can do most of the things but yet I feel the weakness and pain/ache ish feeling on the atrophy area and between index finger and thumb when I use my hand. My neurologist told me maybe nerve damage on wrist or elbow area caused the atrophy but she was trying to not worry me at that time.

My question is this atrophy and weakness on my fingers (especially when I try to push my fingers back or pinch something strongly) could be the first signs of ALS? I also feel like this weakness coming from my arm (mostly forearm and upper side). In ALS weakness comes with atrophy which in my case there is but not lost the functionality or it comes later? And also the weakness comes from arm or hand itself?
Thank you in advance for your responses.
 
As your neurologist told you a local nerve issue is the most likely issue. She was telling you the truth not just reassuring you The ache you feel is more consistent with this than ALS.

most upper limb onset is with the hand itself and it spreads up the arm

I suggest not spending time reading about ALS as you wait for your emg. Worrying never helps and better to go live your best life than reading about something that statistically is not the likely outcome. Good luck
 
Hey Nikki,
Thank you for your quick reply and interest, I have these strange feeling on atrophy area and index finger while for example holding my phone or something and when it comes to pinky and ring fingers, I feel very weak when I try to push them backwards. That’s generally where I feel weakness coming from my forearm. I will wait for the EMG and try to reschedule it earlier if it’s possible but meanwhile your precious opinions are valuable for me, thank you again.

Also I forget to mention that recently I feel twitches on my right arm, shoulder and hand more then other parts of my body.
 
The EMG is used to diagnose a huge range of disease and injury processes.
Don't fool yourself into a rabbit hole by jumping from twitching - EMG - ALS.
All the best in getting back to full health.
 
Hello all again, I’m really sorry to being back here but I don’t have any place to go and ask for some opinion. And don’t want to waste your precious time but so far I believe I really need your opinions, since you saw and experienced so many cases here.
For a quick update almost last 2 weeks my symptoms changed/developed. I will try to explain them as short as I can because too many things going on and about to scream what’s happening.

I had weakness and some numbness on my left leg for last 3-4 months but I was thinking because I’m out of shape and not moving that much and I have back hernia as well. But recently it’s got worse with my right leg too. I had painful all day cramping on my feet, calves and sometimes thighs. It’s bilateral. For me weirdness starts here because as I mentioned before, I have twitchings on my limbs, sometimes on my back and belly area. But the strange thing, before they were popping in one muscle and popping another and they were small/not strong.

But for last 1 week they were happening less but stronger, strong enough to shake my limbs. I had constant twitches a couple times so far until last night which I had on my left thigh area and that was barely noticeable, more like it was happening deep in my leg. And yesterday, before that constant twitching, in the morning in my feet I was feeling some tingling/twitching thing that I can’t figure out what is this but it’s more like electricity going through my legs and feet. I know sensory issues and overall twitching most of the times point away from ALS but I can’t figure it out what’s happening with my body.

Along with the cramping, weakness and twitching on my legs, also my left quadriceps is smaller then right one. I mean when I muscle up both, that small bump on the quadriceps is not there in my left leg. Beside these, for 5-6 days I woke up with pain in my legs, like somebody beat me for whole night and they are in pain/aching and I cannot sleep again. They are being there until I get up start walking for a while.

Among with these I’m having pain on my spine between scapulas and sometimes I feel they go through all over my arms especially on my right arm to the hand which is twitching happening more and weakness is greater than left one. Also I saw I a chiropractor this week which I scheduled long ago and when she gave me a bowling ball and told me hold it away from your body, my armes started to shake as hell immediately, especially right one. I’m having hand tremors and difficulty with writing on white board for last 1 week with my right hand which is dominant one and now I can not hold things for more then a couple minutes, ex. my phone.

I know I’m throwing to many things but I’m keeping a journal about my symptoms to give a full and true story to my doctors in the future but I realised that’s they are becoming too much.

Last but not least I have this tingling/burning sometimes but last night, my feet were burning and itching soo bad.

I don’t know what’s going on, I’m avoiding to writing here but I went to my GP again this week but he barely listened me when he was filling the blood test form and told me, you can still walk and talk, after this point you should wait for your EMG, this is how it works. I don’t know if PALS having these issues at some point or are these things point something else but I know it’s getting worse.

Sorry for the long and overwhelming post but I’m really lost, before the sensory issues I was convinced that I have als, but sensory issues, symptoms on all limbs confusing me so much and trying to find an answer to any direction. Thank you again for your time and answers in advance and sorry for bad English.
 
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Sensory ( feeling) symptoms point away from ALS Your doctor was correct that you need to wait for your emg and as I told you hanging out here and googling ALS isn’t going to help anything. Once you have emg results you will then have next steps to follow
 
Ask for a referral for some anxiety counselling. You are driving yourself to despair and I'm so sorry to see that.
Regardless of what they find, you can get help in dealing with this.

We can't replace that kind of help.
Please don't keep posting until you come back with EMG results.
 
Thank you for your time, I also asked for that and will get in next weeks I believe. Sorry for the trouble and wish you all the best.
I will update you as soon as I got my blood test and EMG.
 
Hello all, back for the quick update after EMG/NCS.

I went to hospital for test today. They did the testing with some electrodes? and a device with two headed which gives the pulses but any needle at all.

So, since I have a follow up appointment with the neurologist who examined me at the first next week, the doctor who did the test asked me if I googled my symptoms or not :) and then she told me ‘I’m not the one who can diagnose and can’t give you the results today, you should get them at your appointment but if I were you, when I looked at the numbers here, I wouldn’t suspect ALS kind staff because, the reaction on your nerves should be slower but yours are not that slow’.

Since the last update, I’m having chin/tongue fasciculations, all over constant twitching ( calves, arms, hands, hips, shoulders, you name it, and right bicep one doesn’t go away at all, even if it’s slightly enough to detectable with light, it’s there) some clonus/ish thing in legs, comes after walk and goes randomly, and stabbing pain on upper limbs, spine and neck area. Sometimes pain is not bearable and I don’t know what exactly triggers it, any advices?

Thank you for your time and insights, I will update you after the appointment with the neurologist next week.

PS: during the exam, since I’m not local, I didn’t understand when doctor and technician talking but I picked ‘+1’ and ‘mild’ for a couple times. I will update the result as soon as I reach them.

Kind regards,
Bill.
 
+1 and mild sound pretty good, though of course, normal is better. Feel free to post the de-identified EMG results. If nothing comes of it all, I'd ask about a physiatry (phys med/rehab) referral. I would bag the chiro for now because depending on what's going on, manipulation can make it worse. And I would try to back off what causes pain, look into therapeutic massage, and above all, stop googling.

Best,
Laurie
 
Thank you so much, tongue twitching and pain is disturbing otherwise I cannot do anything else, I’m trying to keep going, you know. Also I can see that test is done in portal but can’t reach the results tho.
 
Hello all, thank you for your insights and your precious time so far. I'm here for the update with the appointment with neurologist.

When I went to see the doctor, basically she welcomed me, told me that my NCS is normal and I don't have carpal/ulnar tunnel syndrome and that's all, because she was suspecting from CTS at the first appointment. When I mentioned her my new symptoms, she just told me to get painkillers and when I insisted that too many things happened last two months she barely listened me and referred me physio and when I asked her that won't she test for other things which can cause my symptoms, she said I'm too young for a MND and since I can see, I don't have MS as well. Since I'm an asylum seeker, I don't have a full insurance, I just started to work as a SW Developer but can't get a proper insurance unless get a house (still living in and working from a refugee camp) and can't pay further tests because I need to take of my family and that's why I need your further insights.


Since my last post new symptoms, nothing much changed but progressed. I'm still having pain/twitching/weakness on both arms and if I hold something more than 30 secs. my hands cramping. Sometimes even with holding a pepper or mouse. I'm still having nerve pain trough my arms and legs. When I have nerve pain or sharp pain in my hands/arms also pain in spine occurs.

Last two weeks, my legs are cramping but not a sports cramping, mid cramping for whole day, for now, its there for leg left at least 4 days. I can't stand more than 5 mins, afterwards my legs starting to tremor and twitching. Also last 4 days with cramping and pain, I have 24/7 twitching and small sharper cramps as well. Basically I'm in pain all day long for last 2-3 weeks and it drives me crazy. Also two times clonus of legs and feet happened for a couple days and now its not present completely but I feel more cramps when it came back. I have constant twitching on my wrist, ankles and biceps as well. I don't feel them but when I look them with light they are there for 24/7.

Last but not least, before my tongue started twitching, I was feeling burning like sensation on some points of my tongue but especially on Apex area, for last week, I have painful needling and twitching. I don't know what to think. There are so many motor neuron and sensational symptoms and I have no idea what's going on. All I know I'm in constant pain (sharp and cramping pains), progressed weakness which I can't stand, hold anything just a little bit long and constant tingling/twitching, sometimes they flare up but small ones are always there.

I know my anxiety also leads some symptoms but anxiety came after symptoms, not all the way around.

Last two months I'm in a limbo that I convince myself that I have ALS and almost accepted it but yet there is no diagnosis. That's why I can empathy all of you in some way and I really appreciate what you are doing. I'm still amazed with you strength. Any advice or opinion highly appreciated. Don't have any place to get another, tho.

I won't be writing and taking your time further till got a diagnosis or and progress with docs.

PS: I have strange feeling in my throat and sometimes causing swallowing issues. Even if I'm not drinking or eating anything, it make me cough and bothers me. It's more like my throat dried and sides stuck and closing my throat.
 
Bill,

Unfortunately we really can't do much more to help you. You remain unconvinced by your doctor and we would not argue with her findings. This forum is not able to provide you the complex diagnostic information you are asking for. We do sympathize that you have not found satisfactory answers, but that is all we can do here.

Your neuro has recommended you try physiotherapy to see if things improve. This is excellent advice, as a physiotherapist can track strength and response to exercise over time and would provide valuable insight. A physio can provide written reports to a doctor if they feel there is something to explore once they've seen you a few times.

Please consider doing as your doctor has recommended and try the physiotherapist.

Take care
 
Thank you ShifKicker, I'll, I'm planning tho.

But this kind of painful tongue twitching and muscle cramps that last for days and really painful happen in ALS? I mean, I have nerve pain, tingling/needling randomly in my limbs, very quick fatigue, and feeling like my body is falling apart, it's not solid but more jelly, I feel. Does it sound MND? Should I pursue another opinion?
 
BillZgl, You can keep asking questions but... until you do as ShiftKicker told you
there isn't anything more anyone here can add. Most of the symptoms you posted
above are not ALS related.

You've posted 8 times... number 9 really needs to be after you have seen a
physiotherapist as recommended above and by your doctor.
 
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