Hello

[Godblessusall]

Im 32 years of age, and I have tested EMG or in Finland ENMG 3 times now, 1st time when I started have weird twitches as like my whole body twitched and it was 10 years ago. EMG was clear other than I had tremor when they needled my arms, they said most likely very saddle motor unit loss or couple of big motor units. But it was quoted as "unclear" result. Well I felt I didnt need another EMG and just let it pass. I still started having different symptoms like active tremor over my body. In hands, back and legs. It was diagnosed as uncertain but many fysiologists and neuros saw it, but kept it as normal, only thing they saw was my ankles had 2 clonus or something.

Well the fasciculations like small twitches started around 2019 or something first occasionally but then regularly. I was second time seeing doctor in 2023 march because i felt my walking has become rigid and sort of stiff also hands felt stiff especially right hand. Neuro saw that and said "its little bit rigid, but still ok" and said also i had little bit multipple in ankles, but nothing special. He gave me chance to take emg and I took it. It was normal, they couldnt localize the fascs but I had em, also I couldnt say where to point the problem but still EMG was fine, nothing found.

Well about half year ago, I started having notable problems which I couldnt explain. It started as stupid as having sex. My legs totally felt shaky and and uncertain, also when jogging. I think I was jogging last spring but didnt felt too much. In my work when i was walking I started feeling weird. If I run I got weird feeling in my left leg, like it was jammed and felt like swelling and hard and weight a lot more. I didnt go jogging next time until october and I couldnt run too long before I felt uncomfortable. The fascs had been going on also in the legs especially for some time.

I did see a specialist in summer before, and said that I dont have ALS, because als starts from distal locations and I tried to explain the feeling what I had. Didnt mention about the sex hahah, but that I dont feel comfortable running etc, also in spring I got something weird in my left eye, and it stated feeling more heavier than other.

Well my symptoms worsened from october and I did see another time a specialist who said, I dont have anything to worry about and tested my hands, looked my tongue and didnt see any fascs. I tried to explain I got em, and my walking feels stiff and when start running it feels uncomfortable and I had also something with speech. like it feels time to time hard to pronounce words fast.. Well he gave me and EMG for relief but said Im ok, that im wasting my money and time here, and said I should do more activities and stop worrying.

Well now Its like its little uncomfortable even walk distances and If I do something more like jog, I got rigidness and tremors in my legs. Now I also have my right hand which feels much heavier, like I cant keep phone in my hand because it feels heavy. I was 3rd time EMG yesterday and It was ruled out normal, the neurofysiologist tried to ask where exactly do u feel fascs, and I did feel them in my legs and butt but I couldt localize exact point. He examined my arms and legs. but didnt find any, I have had em like last time also, but they didnt feel them in needle.

Well I was of course happy that the results were good, but today again when I was walking I came home and went lying on bed, when I stood up my legs were totally jammed hard rigid and felt COMPLETELY unnatural. I moved them a little and after 2 hours it little bit helped. But I was totally shocked by the feeling.. My CK which was made last summer showed normal but low.

Im worried, what are the odds if EMG didnt hit there where are fibrillations or damaged nerves, what can u guys say. I can provide u documents if u need. Im worried because its now really hard to do homework even like beat carpets, because my right hand easily gets tired. (this has been on since summer) now it feels hard to hold a phone when lying on bed. My left leg is also a bit smaller, but it has been foot surgery since I broke my femur 2017 september. I know its ridiculous to be worried since Ive been trough 2 EMG last 2 years, but my condition has worsened, and thats why im here.

S -CK-tot

42 U/l

<190/Man >17

Also I wanted to add I have had high reflexes and It is nowadays so uncomfortable like walking on hot coal. Also muscles feel weird. It has become like it doesnt need too much of activities. It feels like im supers stiff and hard from legs and sometimes from other parts of body. Like if im playing on computer my body feels like its completely stiff after couple hours.

 

[Godblessusall]

And the thing ive searched a lot of causes for this. EX : MS, MG other types, even chatted with gpt but I really couldnt fit my symptoms together with anything else than als, although the EMG was clear. MS would be possible beacause the tremors, but doesnt explain continues fascs and weakness Ive got. Like my movement feels harder and more complicated and heavier. Thats what it feels like. Also muscles feel very stiff after a little training and heavy. I have absolute power. No like im dropping things suddenly or fell to the ground. I can kick hard for example. But after I kick, my legs feels heavy after it. Thats what I try to tell and it has worsened since summer to this day. Thanks in advance for replies to come.

 

[Clearwater AL]

It looks like you've had three clear EMGs... I guess my signature may fit you.

You cannot solve your problems with the same
thinking you used when you created them.

The root of Health Anxiety....

 

[lgelb]

I would check in with a good internist who can baseline your strength and rule out systemic conditions. I would also ask about a sleep study. I don't see any reason to worry about ALS.

 

[Godblessusall]

I truly feel not ok, my left leg and right arm are very clumsy and feel much more heavier. I have strange symptoms because I can walk, but after 2-3 km my legs start feeling heavy and I can run but the heaviness takes over in the end and I have to quit. Even at as small distances as 1km.. I work in kindergarden and I had 3 years ago no problems nowadays I cant run, sometimes walking feels hard, and wobbly. Same goes in my hands. If I carry things my hands start shaking. I have appointment 17th this month, I just dont know how should I approach the doctor to get some real help with the symptoms. I have clear EMG, which is of course a relief, but my symptoms have been only for 7 months also Ive had long history with other symptoms, which I mentioned above. Do you have any toughts that I should try to ask from doctor? I also have appointment to neuropsychiatrist, to check me up. As my problems can also be a symptoms or characteristics. I dont give up, until I get cleared out. Also I have the symptoms in my eyelids, which feel stiff (6months now) and also now in my cheeks and lips. Thanks for replies to come!

 

[Clearwater AL]

"I have clear EMG." You have three clear EMGs. You've been told not to worry about ALS just above.

" I don't give up, until I get cleared out."... you been cleared out three times.

I hope your future appointments will finally get you to let go of ALS. You've spent many
days on this forum reading old threads.

I hope your non ALS issues are resolved soon so.... again, you can finally let go of possibly
have ALS and leave this ALS forum.

 

[Godblessusall]

I was seeing doctor friday. and he run tests. He ordered multiple bloodworks like b12, thyroid levels and lots more.Also he wanted xray from my lungs. Im waiting the results and he promised to call me 30th this month. He promised me if we do this, he has better chances to consult neurologist who can help to find whats happening/wrong with me.. My legs go lactic acid and stiff after a 500 meter walk the same feeling I have also in my hand. Uphills make it worse. We are ruling out MG, MS and someother rare musclediseases like mitocondric diseases. Im keeping updated if bloodwork comes with something abnormal, which I believe it doesnt but lets hope..

 

[Godblessusall]

Bloodwork was ok, im going mri tomorrow. My symptoms have worsened unfortunately, I have stiffness in my eyes, face, lips and pharnyx feel hard.. My legs go weak after 300 meter walk and heavy. Im trying to get doctor appointment for asap. Its difficult situation. Its unclear what this is.. Neurologists noted that "jalkaholvi laskeutuu " which i cant find accurate word in english.. She said it can be mitocondric conditioning, since I have babinsk -/- which should indicate als negative. Although I have fascs, and lots of weakness.. Its unclear, whats my situation. Im keeping updated this thread.

 

[lgelb]

Google translates that phrase as a fallen arch in your foot. Perhaps a podiatrist could help. The right shoes or other support can make a big difference.

Still no reason to worry about ALS.

 

[Godblessusall]

Im not saying its als, but the symptoms has worsened, do you guys got any advice. Thanks in advance!

 

[ShiftKicker]

Hi there-

This forum focuses on supporting people with ALS. It is not a general medical advice forum. You have actually already been given advice above- Maybe see a podiatrist. Try wearing other, more supportive shoes. If you have further questions, please make a doctor's appointment to discuss your concerns with them.

 

[Godblessusall]

Hello, I was in mri. It was 17/02/2025 I was cleared for MS. My symptoms has worsened a little, and Im heading to specialist in 02/04/2025. Its unclear what studies they conduct to me or what kind of things they do.. Im so tired, stressed... My eyes feel really stiff, same in my cheeks and tongue a little bit. Fascs are mainly still focused in legs.. The weakness is in hamstring and calf muscle, but also in rght bicep and feel little bit same in left (hard to say how much, a bit?).

The muscle weakness, I descripe is: My hand from biceps tires fast, if I write for example it starts feel tired. My legs which are the worst wont take a full day at work, If im cleaning my work place, my legs get so heavy stiff, and tired fast, if i try to step up do almost anything.. Even cycling to work (under 1km causes muscles to go tired) I mostly due this I sit. I have absolute power, but my legs get very heavy and tired fast. Same goes my eyelids, cheeks.. My eyes feel locked, and slow. I got also tremor when I crouch to my back and hands If I hold something heavier and then after it I got stiffness, Its also same thing in my legs. Its kinda tension maybe?

This is very frustrating, and as everyone here knows medical clinics dont immediately study you. And it can drag on months! Mitocondric condition is one possibility, doctor said she didnt suspect MG.. 3 clear ENMG first 2014, 2023, and 2025 january. These muscle weakness symptoms started slowly in june, with tremor after jogging for example... It has since worsened literally.. It was stiffness and tremor for first.. Now I really cant do proper work, I have to put extra effort..

And know I want say to everyone Im sorry that I keep updating here, but it is my only way to find way out, maybe find somebody with good solutions.. I totally want to say all you with ALS that you are fighters! So dont take my words as offense, I truely respect you and I cannot imagine what you are going trough! Ive since last post bought new better shoes, asked for strength baseline (which is good idea) Im still waiting for medical. Its in a month, if you got any suggestions what this might be or what tests to conduct. Please tell me, it would really help. My ck is 47 which is normal, thanks in advance!

 

[lgelb]

Again, none of this sounds like ALS. I'm glad you are looking at a variety of ways to feel/do better, because sometimes that's what it takes.

From what you have said, it sounds like there is a systemic issue (GP territory to refer you if needed) if anything. Bear in mind more than one thing can co-exist and sometimes there is no grand explanation.

Let us know what the specialist says, but please don't post again till then -- you won't get a different answer.