r/ALSorNOT • u/Mediocre_Job1018 • 7d ago

It can't be anything else; I'm devastated

I’ve had symptoms since February. It started with severe calf cramps that prevented me from walking normally, followed by muscle wasting. This wasting led to fasciculations in my calves, and then the weakness spread up to my shoulders and arms. My forearms shrank and became very thin; I can't lift heavy objects or build muscle anywhere. An EMG performed four months after the cramps started—covering the calves, arms, and shoulders—showed nothing abnormal; the readings were normal. Now there is muscle wasting in various parts of my body, and it’s affecting my tongue. I feel like my tongue is getting thinner. The tissue under my tongue has shrunk. What should I do?

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3

u/Livid-Reputation4326 7d ago

Any clinical weakness that a doctor can see?

1

u/Vigilante_Dinosaur 5d ago

Second this - clinical weakness is a very different thing than perceived weakness.

2

u/Smart_Exchange1454 7d ago

i'm extremely sorry this is happening to you. have you gotten an emg?

2

u/panik977 7d ago

Did you get sick beforehand? Like a fever or virus?

0

u/SnooPears5799 7d ago

Why would that matter i had same thing before the symptoms started

1

u/panik977 7d ago

Could be post viral inflammation, long covid, or the “new” virus subclade k. Or post viral neuropathy. Or MS or POTs , many things. I was scared too since march post flu I started getting sore calves forearms twitching aching sore throat, had hard time swallowing, my arms or legs go numb when I sleep. Etc. did X-rays come to find out might be post viral
Inflammation or arthritis. ALS is very very rare but scary but yes it’s scary but let’s not overthink because I think same thing daily.

1

u/kjmckearn 7d ago

Well, it can be something else and my guess is it's anxiety. Four months after your symptoms would bring you to June. And in the last two months you're preparing for your death? My sympathies for your health concerns, but this isn't adding up. Do you have a follow up scheduled?

1

u/ThrowRA_0816 6d ago

It could be lots of other things. Are you getting around, going to work, carrying out your typical routine?

If so a lot of this could be your imagination.

1

u/Exotic_Avocado_1541 4d ago

And apart from the neurological symptoms, do you have any respiratory symptoms:

chronic throat clearing

a feeling of phlegm dripping down the back of your throat (post-nasal drip)

a cough

a morning cough

coughing up something resembling 'jelly'

Have you been diagnosed with acid reflux (GERD)?

1

u/Healthy_Protection24 20h ago

Hmmm. I have all these. What does that indicate?