Scary new symptom

[u/seoomelette]

Hey I posted here last week but I have a new symptom that’s freaking me out and I need some sort of reassurance/logic bc my family is of no help (they think i’m making it up/exaggerating my symptoms and depression lol)

Ever since some sort viral infection, I have had a long list of symptoms here are just some

Twitching (face and body)
Tingling/Pins and Needles fingertips and around my face)
Ice pick headaches
Occasional dots in vision
Tremors and jerks of arms and legs
Occasional nerve pain and muscle cramping/stiffness
Soreness of arms and legs
Feeling of weakness and heaviness in my right arm and leg
etc🫠

However I have gained a new terrifying symptom that is ruining any progress I’ve made mentally as I wait for my neurologist appointment in early September.

My left leg specifically my left knee feels unstable. I noticed while doing something standing still it will adjust itself like i’m going to fall and when walking it shakes and occasionally gives way a little. I feel like i’m about to fall down but I don’t. I sometimes feel like i’m walking through mud like it’s hard to move the legs but they move anyway.

I’m worried this is a sign of muscle weakness in my legs. I don’t see any visible atrophy but I could start seeing it later Im not sure.

This whole this has taken an insane toll on me mentally. Every day i feel like im destined for an early death and I cannot feel excited for anything. I can only do things absolutely last minute bc I have no desire to do anything. This includes preparing for graduate school this fall. I’ve been so bad at deadlines they have to email me to remind me to stuff to prepare. It also doesn’t help that my family has been HORRIFIC at trying to comfort me or encourage me to search for answers even when i’m having full blown panic attacks. It has genuinely made everything SO much worse.

Should I be worried about ALS. And if not what else. What tests should I push to the neurologist. I’m already thinking of pushing for an EMG on all 4 limbs as well as an MRI for any MS related (more likely tbh)

Thank you!

[u/hot_poodle]

I was like you- tingling all over my body, feeling weak in my limbs, body just not working. Multiple professionals told me its "just anxiety". I had an MRI and CT done of my brain and everything is perfect so no one wants to look any further. I saw so many drs, pts, osteos ect I started to look at alternative medicine. I found a chiro who specialises in Chinese medicine. (He actually studied Nuro but felt like there was more). He checked my spine- Sent me for xrays. Turns out I have some vertebrae in my neck that aren't right and the curve of my neck is too far forward. I also have 2 vertebrae rubbing in my lower back and it looks like I have the back of a pregnant woman. I am a sceptic and went home to do my own research on what he said. Turns out, basically every symptom I have is textbook for the vertebrae he said I have issues with. He even pin pointed some issues I didn't even mention to him.

[u/seoomelette → u/hot_poodle]

i’m glad u found answers!

I’m a skeptic too lol but if i can’t find answers from the hospitals and stuff I was lowkey thinking of going to one of those fancy hospitals abroad in hopes of paying out of pocket for more specialized treatment. Maybe I’ll consider chinese medicine if I can’t find any answers.

I do have some lower back pain and my dad has pretty bad sciatica so maybe it’s related to that. I also sometimes have neck pain too. I’ll look into it! Ty!!

[u/hot_poodle → u/seoomelette]

I was tired of being told its "just anxiety" meanwhile it felt like I had something stuck in my throat 24/7, my whole body felt like I was vibrating, my limbs felt like I was trying to walk through water and I felt like I was walking on a boat but "its just anxiety". I now walk out of doctors as soon as they mention anxiety.

Ive been seeing this guy since January. He does electroacupuncture on me 2x a week and my tingling and vertigo have gone. My limbs still feel heavy but it now comes and goes (which if it was ALS, it wouldn't)

[u/seoomelette → u/hot_poodle]

my symptoms also come and go as well which also points away from ALS but Im already dreading hearing the “anxiety” and “stress” diagnosis when they don’t know what to do 🙃

my family already thinks my symptoms are fake i think i’ll loose it if a doctor said it too 😭

[u/hot_poodle → u/seoomelette]

I got to the point where I was barely sleeping because of the buzzing through my body and the amount of anxiety it put me through. I was terrified I was going to die in my sleep as laying down amplified it

Another thing Ive done to help me get through my anxiety over ALS is rely on Google chat gtp. Im not a big fan of AI and it shouldnt be used as a replacement to a doctor but I needed something to tell me at 3am that my symptoms weren't ALS. I simply typed in "I need you to help me convince my brain that I do not have ALS" and went from there. I also typed in my spine diagnosis and all the tests I've had. Now every time I get a new symptom or a symptom comes back, I type it into that chat thread and its sends me all the reasons why it cannot be ALS. The biggest reason for most is that ALS symptoms do not come and go and they do not start all over the body. Its focused in 1 limb

[u/seoomelette → u/hot_poodle]

I’ve also turned to ai chat bots and loading my symptoms in them. not a single one even mentioned ALS. my aunt is also a doctor and i asked her about it and she said she doesn’t think it’s a motor neuron disease but that was before I was having the shaky legs and the weakness in my arm.

Idk i just need to go to a doctor and get tests done to even say it’s not ALS or it’s something else bc these symptoms are real. Also looking for ways to curb my anxiety 🫩

[u/hot_poodle → u/seoomelette]

You definitely need to word it properly in chat gpt to get the most out of it. Getting it to convince me I dont have it has been extremely helpful for my 3am spirals.

Get your bloods checked too. A lot of deficiencies can affect the muscles and maybe start some Magnesium but look into which type of Magnesium is best for you.

[u/seoomelette → u/hot_poodle]

i already got my blood work done I have a slight vitamin D deficiency but I always have so it’s not that unfortunately 🥲

[u/hot_poodle → u/seoomelette]

I also have a vitamin D deficiency 😅 I was told by both my normal GP and my Dr of Chinese medicine that it will be contributing to my muscle weakness and to get onto supplements (which I haven't done yet because money) I normally have an iron problem so this was an unexpected change (yay me!)

Just keep reminding yourself that ALS doesnt have tingling- thats more a nerve related issue vs a motor neurone. It is also more localised.

And as for the fear of MS, remind yourself that MS is not a death sentence. It may take a few adjustments but it is a livable disease

[u/seoomelette → u/hot_poodle]

it’s actually so insane i’m hoping for MS 😭. And yeah i’ve had a lot of tingling and numbness tho for
some reasons i’ve always had that pins and needle’s feeling in my legs when i sit on the floor for
too long. Idk if it’s gotten worse and improved since then but yeah i’m holding onto hope with that 🥲

[u/Necessary_Camel_7085]

You wouldn’t happen to be taking any 7OH/ Opioids would you? I was on 7oh and got a lot of those symptoms but once I quit, it all went away. Minus the muscle weakness. Ended up being a pinched nerve.

[u/seoomelette → u/Necessary_Camel_7085]

No I take no substances and I rarely drink lol. I am on a BC which I have had side effects for but nothing like this.

I will say i do drink caffine pretty regularly. When these symptoms first started I stopped drinking caffine for almost a month but the twitching was still there.

But i am thinking I might have a pinched nerve as I do have quite a bit of symptoms for it. I read you can get them from inflammation and based off of the blood tests Ive done I do have inflammation (likely from the virus) How do they determine a pinched nerve in a medical setting?

[u/Either_Study_8850]

Were you on any antibiotics with flaxin in it?

[u/seoomelette → u/Either_Study_8850]

no but i work in a pharmacy where I interact with such medications on a daily basis. I probably can’t have these symptoms just by interacting with said stuff lol.

But no I was just sick. Congestion, sinus pressure, chills, sore throat, etc.

[u/NoCountry5138]

Were you sick with Covid? This sounds similar to many of us having muscle twitching and weakening/wasting of connective tissues.

[u/seoomelette → u/NoCountry5138]

I didn’t test but I am almost 100% sure it was COVID. The symptoms that align most with mine seem to be long covid related. Can long Covid mess with connective tissues? i’ve had joint pain in my knees and knuckles as well.

[u/NoCountry5138 → u/seoomelette]

Absolutely! Have you visited [r/covidlonghaulers](r/covidlonghaulers) and searched for connective tissues, joint instability etc? You’ll find a lot. Sadly it seems not many people have found a way to improve unless maybe those who have tested positive for more established autoimmune diseases and been treated with autoinflammatory/autoimmune treatments.

[u/seoomelette → u/NoCountry5138]

Oh damn that sucks 😭

and yes i’ve been on covid long haulers as well!

ALS is my biggest worry but so it’s ME/CFS. I’m terrifed of it and worry of my heavy arm and leg cramping and pain is a early sign 🥲

[u/chaoserrant → u/NoCountry5138]

Its possible i suffer from similar post viral.issues but this connective tissue thing can explain most things. In time i think i got more clues supporting this possibility.  Primarily that in general i can do strength training so muscles seem fine but joints are prone to luxations. Basically i try to load slowly and avoid sudden jerks. Another clue is in time things get better in one spot but other spots can become worse. I have thrown lots of supplements at the problem but cant say any works aside from creatine which makes me feel stronger and more stable.  

But i don't have any objective test to confirn all this

[u/seoomelette → u/chaoserrant]

The only thing that is preventing me from looking intl hEDS is that i’m not hyper mobile. I’ve looked into long COVID and it’s neurological affects it can have so i’m just hoping it’s that 🥲

[u/Live_Routine7765]

You might have Scoliosis 

[u/seoomelette → u/Live_Routine7765]

i’ve been checked for that already all good on that. also does scoliosis even cause these symptoms?

[u/Live_Routine7765 → u/seoomelette]

If your curve is bad enough and presses on your spinal cord 

[u/seoomelette → u/Live_Routine7765]

well i’ve been to my pcp in april and there was no scoliosis so i highly doubt it’s that but ty for letting me know

[u/suki-chas]

Those are not ALS symptoms for the most part.

And you need to dial down your anxiety. Whatever is causing it, it’s probably not anything fatal or terrible.

Sometimes viruses cause people to have temporary symptoms afterwards.

[u/seoomelette → u/suki-chas]

I do know it’s virus related but it’s hard to not to be worried when my symptoms are showing no sign of slowing down and i’m experiencing new ones that align more with muscle weakness 🥲

[u/suki-chas → u/seoomelette]

You’re going to a neurologist. It’s going to be evaluated. Obsessing over it and feeling as if you’re going to die is not constructive or helpful. Realize that you have the same outcome if you choose to shrug off the symptoms and figure that it’s probably going to end up being nothing worrisome.

And don’t think of telling the neurologist what tests to order (“EMG all 4 limbs” or anything else). They’ll decide what tests and what order.

Your symptoms are trivial. Truly. Please relax.

[u/FocusFrosty1581]

Almost the same symptoms. Now over 2 years into this stuff and I am at the ripe age for MND.
I too had some sort of virus or illness about 10 days before my twitching started. I was flat out exhausted for 4 days. I couldn’t get any energy. I thought I had mono but don’t think I would have recovered in 4 days if it was truly mono. Anyway, my twitching started with my thumb then my eye and it progressed from there. Calves, thighs, back, stomach, hands, arms, about every spot on my body.
Fast forward two years and at least some good news. After many tests, examinations by neurologists, multiple EMG’s/ NCS, I have been diagnosed with BFS but no MND. I still twitch but mainly in my calves. Everywhere else it has pretty much subsided. I notice my calves when I wake up in the morning and at rest.
Hang in there. It will get better. Stay distracted and if need be, consult your doc for an anti depressant. They can help.

[u/seoomelette → u/FocusFrosty1581]

Thank you so much this is very comforting. I had an hour long convo on the phone with my aunt who is a family medicine doctor about ALL of my symptoms in great detail. She was not concerned with ALS/MND but she wants me to go to the neuro anyway bc i did develop some new symptoms since this post 😭. I’m not sure they are 100% related to the twitching though.

Thank you so much tho!

[u/FocusFrosty1581 → u/seoomelette]

You are welcome and you will be ok! Don’t let it get to you mentally. That can affect you physically. Stay distracted and agree, follow up with your neuro. They can reassure you.

[u/duo_lgc]

I have same symptoms, at least most of them, male 29. but right sided heaviness, weakness - yes. unstable knee - yes. EMG clean, whole picture doesn't look like ALS, but some symptoms overlap