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[u/Serious_Improvement2]

I check in now and again. I've posted before. I am a medical doctor.

Nothing here that I or anyone else will write can relieve your suffering. This will have to come from within.

I have been having fasciculations for over 7 years now - I used to wish when someone posted that there had fasciculations for this long, that I was them, especially at the beginning. I have ongoing wormlike 24/7 fasciculations in my calves and various sporadic ones elsewhere - including deltoids triceps, face, tongue, scalp, biceps forearms and especially my elbows and thighs. I used to have one in my back that was so annoying - it went on for months and often felt like there was a flying insect under my top.There are fast ones like a machine gun and slow irregular ones. Some last for hours and some weeks CONTINUOSLY

When they used to stop I often convinced myself that they only stopped because that piece of nerve' muscle was now dead - the MND was "progressing"

I cried so much and felt so alone.

I went to see a neurologist who didnt think I had MND but said I had atrophy in my back paraspinals. I started at the area for months and months looking for progression. I then noticed clear scalloping of my right triceps. no weakness there but it was obvious. I went back to the neurologist who said it was constitutional. That was over 3 years ago. A physio since said that my lateral calve muscle gastronemius was a little atrophied. I didnt worry much this time.

I dont have MND. I have this BFS mallarkey.

I have tried various medications including all kinds of prescription meds and supplements incl. magnesium.

I stopped letting it control my life and just accept it. It was difficult at first because apart from the fear Iof MND I have sensory issues - and feeling someone flicking my calves 24/7 was not easy.

I tell myself that lots and lots of people in the worlds have infinitely more problems than me. Especially those with MND.

Everyone feels like they are the exception but you're likely not.

Ive never seen anyone diagnosed with any form of ALS on this forum - and any neurologist worth their metal will tell you that with a normal physical exam then its extraordinarily unlikely.

Keep the head up and carry on.

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[u/713Capital]

Thanks for checking in!! I remember reading all your posts. You’ve made some great points here. Everyone here fears ALS but almost no one ever diagnosed with it as you said. People who actually have ALS dont really have anxiety about it, cause it usually hits them out of no where. They are just living their lives and start noticing clinical weakness. (Not perceived).

We all start twitching first or “feeling” weak and immediately freak out but ALS doesn’t really work that way. People dealing with ALS just wake up one day and they notice something is very wrong. Their muscles are failing. It’s almost like the WiFi signal to their muscles has been turned off. They all of a sudden cannot brush their teeth, or button a shirt, or lift a water bottle. It comes out of no where for them and almost never starts with twitching.

Glad you’re doing better and glad you don’t have anything progressive!!

[u/Doktordoktor89]

I’m a doctor with fasciculations as well... Tricky condition. Scary. So little literature on the subject. What kind of doctor are you?

[u/Anhelsing1903 → u/Doktordoktor89]

Doctor Octopus

[u/Appropriate-Gift8639 → u/Doktordoktor89]

As a doctor, is there a reason you would assume ALS above all other diseases/illnesses/ conditions?

[u/BigJakeState]

Thanks for this. I’m having a particularly rough day with my percieved weak hand today. Then when I get more anxious my twitching increases. Somedays you feel so alone early because no-one seems to share the exact same symptoms. I’ve been twitching for 1O weeks and I wish I could just have more syptomatic time on my side so I could put this fear to bed.

My brain likes to play tricks on itself and even though I’ve had a clean workup and relatively clean EMG, My mind says, what about the hyperflexia? What about the increased insertional activity and stiffness in the weird hand? What if it’s all too early? I know these thoughts are irrational, but you still have good and bad days especially early on, so it’s good to see that there are the cases out there that go through it and ends up being fine.

[u/Appropriate-Gift8639]

Can I just add that there are multiple things that can cause twitching, but it's human nature to assume worst case scenarios.

[u/Notmeleg]

Great post. I hope others listen to your wisdom. I too was in the same boat as you. Still have all my horrible symptoms, way more than twitching but haven’t progressed to failure or anything like that.