Perceived weakness and twitching

[SeanG21]

Hi all. From the start of the year I started getting some weakness in my lower legs, like they weren’t holding my body up properly as they did before and my gait seemed to change to compensate, into I think a bit of a limp as well as twitching in my face. But it seemed to come and go so while a bit worrying I didn’t pay too much attention to it. I work in IT and my hands when trying on the keyboard started to get tired and stiff my quickly, and even when chewing something for a long time it felt like my jaw muscles would get tired.

Perhaps unrelated, I’m not sure, but then I had a mysterious possibly viral episode 2 months ago now where it felt like my entire spine and neck up through to the bone to the brain stem in my head became extremely stiff and hard to move, so I went to the emergency room by ambulance. They noticed I also had a fever so did a check for covid and the flu, both negative, then performed a CT scan on my brain and neck but couldn’t see any swelling or bleeding so sent me home and made me an appointment with the neuro. In that 1 week period waiting for the appointment the spine stiffness improved but my legs seemed to start feeling like I was being weighed down and pulled towards the earth.

This and the fever continued. Met the neuro a few days later who ordered the full blood work including lots of checks for autoimmune diseases and everything came back clear. I explained the leg weakness and he did the standard tests where you walk in a line, he pushes against different directions etc and said it’s not clinically visible so it’s not something to consider at this time. But this point I was worried about my legs and tried walking a bit to see if it helped while I love going on walks and hikes my legs now seem to get really tired and sore quickly - then I realized when I raised my legs the muscles in my thighs would start to twitch. Then randomly my calfs. I started getting small twitches also in my shoulder, back, butt, etc, but mainly in my legs, which worried me. I know what you all say and it probably is the right advice, unless they can measure it not moving or not being able to generate enough force to push against them etc then it’s not clinical, but all I can say is I know my legs feel different, heavy and not right. When I wake up in the morning especially and try to move them they feel like they don’t belong to me. I think because of this I don’t sleep more than a few hours and keep waking up in a sweat. So I titled this perceived weakness to be objective but something has changed.

Anyway then was ordered for a brain and spine MRI which found nothing significant. My mother has MS so I was suspecting that’s what they would find but doesn’t look like it’s there. At that point the neuro basically said I’ve looked at all I can think of that would explain this, try going back to a general internal medicine practitioner and look for the cause of the fever. So that’s what I did, and they searched for possible endocarditis with a heart echo, colonoscopy for any large intestinal issues, all nothing. Then after over a month the fever just went away, and the doctors said they just don’t know what it was and probably never will, likely some unknown virus, but good that it’s gone. So that left the remaining weakness in my legs and twitching which now seemed to happen pretty much constantly in my legs at rest and other places sporadically. They said you’ll have to go back to a neuro for that, and I requested to get sent to the best one nearby who luckily just had a cancellation so I was able to see him quickly.

The new neuro who is great went through all the results of the blood work and scans from the first neuro, as well as all the blood work and scans / results the general doctors did, and explained that he can see I’ve been through an ordeal over the past 2 months and that he trusts me on the changes and weakness in my legs and that knows some people have to fight and advocate for themselves to get the right diagnosis when other doctors tell them to stop and that I wouldn’t be doing this if I didn’t think spending was wrong. And then he asked me so what are you most worried about here? And he already knew the answer, but I said ALS. He said just given that I haven’t lost enough strength he doesn’t think so, but if it would help give my mind some rest he asked me if I wanted to do an EMG, and I said definitely, so that is scheduled but unfortunately not for another month or so.

I guess the only answer is now ‘just wait for the EMG and hope it’s OK’ and that given what the doctors so far have thought the odds might be a bit in my favour at it being OK, but who knows. I’m not really sure why I’m reaching out to you guys and I’m typing all this but I’ve just had no one who I can talk to about it at all, I’ve been off work for the whole 2 months with worry and I feel like I’m breaking down. I just want to go back to normal the way I was 6 months ago.

 

[SeanG21]

Forgot to mention I am 32 so would be relatively young onset I suppose and that is another reason why I guess the original neuro was a bit dismissive and the new neuro also not convinced but rather more sympathetic to my anxiety, since unless there were clear signs of failure level weakness they wouldn’t suspect going down that road. But it’s just that I feel like I’ve searched and eliminated everything else and I can’t find out what is causing it.. and unfortunately ALS I guess by its nature of being diagnosed by elimination also makes people conversely think ‘well if I can’t find any other reason then it only leaves ALS as that’s how they diagnose it.’

Also I live in Japan though I was born in the UK so if anyone ever reading this also lives or is visiting here and needs advice on anything medical related please feel free to PM me at any time and I’m happy to help out, since I’ve become somewhat of an expert being sent around various hospitals and departments the past few months haha..

 

[lgelb]

I expect a reassuring EMG as regards ALS, but I'm sorry to hear you've been off work for 2 mos w/ this. That's probably not helping your sleep and the feelings in your legs.

Sometimes keeping a normal routine in work and exercise along with some targeted stretching, walking, swimming, bodywork and such can help you recover from a possible viral or bacterial infection, for example, even if it's not showing itself in your labs. They don't always.

Sleep is really important, too, needless to say. So if it would help you de-stress, I'd seek counseling or at least do some more socializing with friends, some events you enjoy, whatever would actually better represent "normal" than where you are now.

If you still have jaw pain, a bite guard at night might help.

All in all, it's not irrational to "act as if" based on the thorough testing you've described to rule out serious things. And you haven't mentioned anything that makes me think of ALS.

 

[SeanG21]

Just wanted to give an update in case anyone is going through something similar. My symptoms remained mostly stable over the 2 months waiting for my appointment, except one new worrying development which was numbness over my face and tongue and the dreaded slight fasiculations in the tongue too. As a precaution for stroke or internal bleeding etc they performed a brain CT in the interim while waiting for my EMG.

So EMG was today - both performed and summarized after by the same doc who is the top ALS doctor in the national research hospital. First did a more thorough strength test than I’ve had before and found almost nothing except some weakness in pinky finger extension. Did the EMG on 2 different muscle groups in one of my legs (which is where I first noticed the lack of strength) and said they both look clean. His opinion was that I don’t really have anything except the twitches pointing towards ALS and several factors which point away, so given that and all my visit history and todays result he diagnosed me with Functional Neurological Disorder (Movement) and said I should focus on rehabilitation to build strength in one of my muscles I have complaints about and to see how that goes for now. I’ll accept that and if anything else comes up or it changes then deal with that as it comes to it.

Just wanted to thank all the PALS and CALS on this forum for being so welcoming and kind to us from outside the community and answering every single one of us even when it’s clear repetitive panicky baseless worry filled word soup from people who haven’t read the sticky. It really does help when people feel alone as it can so often feel when you’re sick and just a reassure post or bit of advice helps. I’ve signed up to the monthly donation to ALS research and the patient care chapter in my home country and I hope so much to see modifying treatments for this condition in my lifetime.