I have congenital myasthenic syndrome ( born w MG). I feel like this episode did not cover a whole lot about the disease and what us patients have to deal with in our every day lives. No one will fully understand the struggles we deal with every day. Great episode but needs to cover much more. Micah makes a great point here. It’s extremely hard to stay positive when your struggling alone or with someone. Depression and anxiety is a huge deal when it comes to living with disease. Especially a muscle disease. How would you feel if you woke up everyday not knowing if you could grab that coffee cup off the shelf, or go out to dinner not knowing if you can chew the meat on your plate. It’s a huge struggle and you all need to make that aware.

So glad people are starting to learn about MG. You guys did an amazing job presenting it the only thing is you need to be more realistic about people’s outlook. You’re whole life must change and there are times you feel as if you’re going to die. You can’t be positive the whole time. Most of us with MG go through a period of depression and struggle with the new us. Yes eventually you learn to love the new you but most don’t start that way. And I know lots of MGers that still struggle with depression and anxiety. We need to be honest about the mental health issues that arise from a major medical issue like this.

@DontSassMeTTV

5 жыл бұрын

Micah Coomes I wish i could understand the “old” vs “new” us. I’ve had this since birth so this is all I’ve ever known.

There was a time that I did NOT think I was going to survive. I couldn't swallow, I could barely talk, I had severe double vision (diplopia). Getting dressed, holding a toothbrush or a fork/spoon was out of my ability. It wasn't until I started researching my symptoms that I questioned my GP that there was something wrong. She didn't take it seriously, but the Ophthalmologist that saw me for my Diplopia set me on the right path...you have to know what you're dealing with before you can come up with a plan of attack!

I know someone with it. I have Dysautonomia. It’s in the same umbrella. I have chronic fatigue due to it. I faint a lot. I have cerebral palsy too. My biggest issue is blood pooling, adrenaline rushes and vitals fluctuating.

Wish they would have gone through how derisive MDs can be when you complain of fatigue, difficulty focusing, shortness of breath and incredible weakness. I was not depressed, it itsn't from age,it isn't because am female. The 7th neuro let me try Mestinon even though no antibodies, what a difference in ability but muscles are weak from 5 yrs of being told no treatment it is another rare disease by pathology, you can have more than one thing. This drug is not a cure, just helps my muscles for 4 hrs til take another dose and if I do too much I have to lay down immediately. not playing.

@Snarkapotamus

Жыл бұрын

The problem with Pyridostimine (Mestinon) are the Bromides that just crush your intestinal track...I do 2 halves (30mg) a day and it seems to do just enough to allow me to do the things I need to do without the intestinal issues...

@cherylcarlson3315

Жыл бұрын

@@Snarkapotamus ,you are lucky to get effect from such a small dose. I was doing 60mg every 3 hrs to be able to breathe, swallow, get dressed. Switched to 180 mg ext release so actually can do things longer. Yes, had frequent stools at the start but eased up by 3mos except if I eat a big salad. For me was entirely worth it.

I really don't get the whole "My faith helps me... when I am in heaven I will get a new body" Em why has God given us this heinous disease?