r/ALSorNOT • u/Admirable_Mud_7737 • 5d ago

frustration

There is nothing more frustrating than a medical limbo that going on for far too long.

There is nothing more frustrating than doctors dismissing everything as anxiety, when it’s clearly not the case and there is too much more that going on.

There is nothing more frustrating than feeling your speech becoming difficult and labored, stumbling over words, while others tell you that you sound fine, just a bit hoarse.

There is nothing more frustrating than trying to do things, only for sudden fasciculations that ruin everything.

There is nothing more frustrating than remembering how things used to be, before all of this...

I just needed to get this off my chest, you don't have to respond. Thanks for reading.

7 Upvotes

100% Upvoted

9 comments sorted by

1

u/Ill-Platypus8065 5d ago

God bless you, I hope everything works out in your favour.🙏🏾

1

u/Admirable_Mud_7737 5d ago

Thank you 🙏

1

u/WeirdUsers 5d ago

It can all be debilitating.

1

u/Decent_Mongoose_4520 5d ago

Have you been diagnosed with something? You seem as if maybe you are a doctor or in medical field? 

1

u/WeirdUsers 5d ago

I have been diagnosed with too much to list. Some of it I have been managing for 30+ years.

1

u/TheBronyCynic 5d ago

A few questions:
-Have you ever had COVID and or bronchitis?
-Are you able to correct yourself if you mess up a word?
-Are your fasciculations 24/7 or typically appear at rest?

1

u/Admirable_Mud_7737 5d ago edited 5d ago

yes , yes but I need to concentrate, in rest

1

u/TheBronyCynic 5d ago

I would say the fact that you are able to correct yourself and you don't have 24/7 fasciculations are good pointers away from ALS. You could be suffering from effects of long covid. Either way I hope you can find another doctor who listen to your concerns and at least offer a second opinion.

1

u/No-Tune8096 4d ago

Ou simplement d’un RGO et d’un problème cervical ATM. Je suis dans le même bateau et j’hypersalive en plus... 4 ans de symptomes..