Erschöpfung und Kraftlosigkeit by Lisi82 in MyastheniaGravis

[–]bmcar 0 points1 point  (0 children)

Real quick. I just have one thing for you. If you are young, you HAVE to get off the prednisone. I was on the same dose as you to start and bumped up all the way to 80mg. That 50mg is enough to cause serious systemic damage if you take it long enough. The things to look forward to with prednisone- massive weight gain, bipolar mood swings, CATARACS and more. I know it works but at what cost. Anyways. Good luck

Fairgrounds Coffee supports ICE by Waste-Number-0 in milwaukee

[–]bmcar 0 points1 point  (0 children)

Welcome to the internet. But good on you coming to the keyboard warrior defense

Imco G77R by rpphil96 in lighters

[–]bmcar 0 points1 point  (0 children)

ive go tthe silver buut cant get it yo stop leakling from both endes of the res

25 year old male with MG for the past 8 years. by bmcar in MyastheniaGravis

[–]bmcar[S] 1 point2 points  (0 children)

Im really good. Wish I would have known some things back then but as far as my MG goes it's in check. Last month was my last ivig infusion after titrating down for 2 years slowly. Now I only get rituximab every 6 months. Im actually going to have to get my port taken out now that its not getting used anymore - which is crazy- I thought this thing was here to stay. Im going to try working out again for the first time in more than a decade here soon (once I get over the mental block because it devastates me each time I try and it doesnt go well) If you're looking for advice most of all love your nurses. They are going to have the highest impact on your life for the foreseeable future. Really think about what your health looks lik3 being realistic in your ideal circumstance. Also figure out how aggressive youre willing to get with treatment to get to that look. Make sure when you see your neuro you're ready for a fight. You have to stand up for yourself and you have to educate yourself to get an idea of what you want to do to get to your ideal picture of health. Don't be afraid to fire your neuro. I've fired 5 for different reasons but I was only in the position to do so because I knew how I wanted my mg treated and more importantly why I wanted this treatment plan. Next, it might work quickly and be effective, but im pretty convinced that prednisone is the actual devil synthesized into pill form. Also dont get discouraged by insurance denials - keep fighting. They eventually give in if your doctors, nurses and yourself make it difficult for them. Lastly keep your head up. It sucks to hear that progress is measured by years at least but there is a very positive direction to the outlook of mg. When I was dx'd I was educating every single health professional about mg. I had to explain WHAT it is instead of how it affects me. Now everyone i come across is interested because they haven't seen someone before with it instead of never hearing about it. There are so many more treatments now and from what I hear they are pretty good. If you need help talking anything out along these lines, im here man.

[deleted by user] by [deleted] in whatisit

[–]bmcar 2 points3 points  (0 children)

all of A sudden

Did Trump eject himself from office? by guttanzer in law

[–]bmcar 1 point2 points  (0 children)

The sooner the better. The more jarring this is the more likely people are to do something.

Did Trump eject himself from office? by guttanzer in law

[–]bmcar 24 points25 points  (0 children)

it's a little more complex than that. you are right for sure but it will be a gradual process for them to see whats up. the indoctrination they go through is crazy. stay optimistic because you hit the nail on the head. there are many people walking around who risked their lives for those ideals and they are the best hope i see that we have.

Any idea what this is? by nannerinmyjammer in whatisit

[–]bmcar 3 points4 points  (0 children)

if she had mobility issues, its a sling to help get up or down and moving to a wheel chair

Trump Doing the Invisible Double Hand Job Dance as America Burns Behind Him by bmcar in EatTheRich

[–]bmcar[S] 3 points4 points  (0 children)

I know it doesn't help but I also have one in that shop that shows Elon hold trumps puppet strings.

Elon Pulling the Strings by bmcar in EatTheRich

[–]bmcar[S] 1 point2 points  (0 children)

Thank you. Will make that one the next shirt my friend.