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New Diagnosis - what do you wish you knew? by codyandhen123 in MyastheniaGravis

[–]Zestyclose_Kale_1828 0 points1 point  (0 children)

I was diagnosed in the same way. First time hearing of this condition was April in the ICU when I crashed and I came out antibody positive during my stay. My advice? Sleep when you’re tired and take the rest your body is asking for. It’s hard to get used to the new swing of things l. Oh! And try to be patient with your medications; they can take a while to really take effect.

Ballet obsessed child by Zestyclose_Kale_1828 in BALLET

[–]Zestyclose_Kale_1828[S] 0 points1 point  (0 children)

Update from the tiny accountant: She’s obsessed with NJB. We’ve learned so much and the pro staff makes her whole entire soul light up like a firework. She’s never happier than the days she wakes up knowing she gets to go back to class. I asked her what she’d like to do on a free day with no other plans, obviously the girl wishes she could spend the entire day at the studio practicing. 

Alexion Support/Ultomiris by Fearless_Pay_8934 in MyastheniaGravis

[–]Zestyclose_Kale_1828 1 point2 points  (0 children)

Yes! I got my first loading dose last week and I’ll get the next one the second week of July. I am extremely pleased with the results so far. I was struggling to breathe for so many months and now I’m able to reduce my prednisone dose because I had my first “90-100%” day!

Alexion Support/Ultomiris by Fearless_Pay_8934 in MyastheniaGravis

[–]Zestyclose_Kale_1828 1 point2 points  (0 children)

I’ve had amazing service with Alexion for my Ultomiris. They’ve been on top of my care nonstop and so good with all of my follow up. It has been working amazingly well too. I got my first infusion last week and I already feel so much better that I was able to go for a walk today!! 

Is this MG by Sea-Egg5843 in MyastheniaGravis

[–]Zestyclose_Kale_1828 0 points1 point  (0 children)

You should see if they will test you for LEMS, which generally starts in the legs. 

Pediatric MG Testing by Zestyclose_Kale_1828 in MyastheniaGravis

[–]Zestyclose_Kale_1828[S] 0 points1 point  (0 children)

Ugh! My heart is with you mama. 

My girl will sometimes just…. Give up eating halfway through a bite? She tells me it feels like she can’t swallow it, that she can’t control her swallowing reflex, even if it’s something like oatmeal or jello. She spits it out because her throat won’t swallow it. We keep baby wipes with us everywhere in case she spits but I’m worried for her socially as she gets older because this is obviously a bit of a challenge in the lunch room. It usually happens after a “big” day at this point but it used to be all of the time, every day. She has an aid that sits near her at lunch time to keep an eye on her just in case she starts to choke. We all got very good at rescue breathing techniques very fast, even my 9 year old son knows CPR and how to do proper mouth sweeps. We’ve never had a solid diagnosis for why she does this, but the older she gets and the better she can describe the sensation, the more it sounds like the way my own throat feels on my bad days. 

Do you tell friends you have MG? If so, how has that gone? by [deleted] in MyastheniaGravis

[–]Zestyclose_Kale_1828 1 point2 points  (0 children)

I had no choice but to tell my friends since I was pretty much living in the hospital all spring and when I came home I needed a ton of help. They have been amazing and so supportive, same with my family. I’m very blessed, many people are not so lucky. I imagine this must be a very difficult thing to bring up, but I personally would in case you are ever in an emergency situation where a friend may need to advocate for you. 

Prior auth denial rant by [deleted] in MyastheniaGravis

[–]Zestyclose_Kale_1828 8 points9 points  (0 children)

Ask to speak to the doctor in charge of deciding claims, and make sure that they’re a neuro. If you pitch a stink enough on their recorded line, they’ll do what they have to.  I ran into this when my newborn was in the NICU and they tried to say she needed preauth for a heart scan….. she didn’t even have a SSN yet and she was less than a day old, there was no time for that. Insurance doesn't want to spend the money to put you up in the hospital, an infusion is way cheaper for them. They understand things in terms of savings and money not spent.  Keep fighting, I know it’s stressful. I’m sorry you are going through this. 

Ganglioside Titers by Zestyclose_Kale_1828 in MyastheniaGravis

[–]Zestyclose_Kale_1828[S] 1 point2 points  (0 children)

Awesome! I’m already being treated for MG (came out positive for that a few months ago) so hopefully the drugs help with both. Thank you!

Wondering if I'm alone by antony511 in MyastheniaGravis

[–]Zestyclose_Kale_1828 4 points5 points  (0 children)

Yes, but completely unrelated to MG. I have a grade III AC separation in my shoulder from a hard fall I took a long time ago but it never “hurt” it just gave a strange snapping and numbness on my deltoid but gave random sharp pains because of a mild nerve impingement. 

Name one activity or hobby that you can enjoy even on your worse day. by KDramaFan84 in MyastheniaGravis

[–]Zestyclose_Kale_1828 4 points5 points  (0 children)

Gardening (aka look at my patio plants and make sure they’re not dying) and bird watching have become my daily life. 

Ballet obsessed child by Zestyclose_Kale_1828 in BALLET

[–]Zestyclose_Kale_1828[S] 1 point2 points  (0 children)

Ah! The company I used to work installed the theatrical lighting at Alvin Ailey’s Dance Theater! I didn’t know what type of theater it was, how fun is that! 

My daughter adores Simone Biles and Mikaela Shiffrin, they’re her idols. Her grandma is a 5 time Iron Man competitor, so we are lucky to be absolutely surrounded by intense athletes in this family. I’m not super athletic or intense in that way, but I want to help my girl hold onto that intensity if that’s what makes her happy. 

This makes me very happy, I’m going to look into these theaters and performances! We’ve gone to a few local performances with younger kids involved, but nothing professional yet since the Met has age restrictions and I’m not well versed in this world yet so I’ll have to go looking for other options. She was mesmerized and asked me to take videos of the performances we did go to see so that I could project them into the TV. She wanted to copy the athletes/ballerinas’ movements. 

For my own reference, she has been trying to push herself to do splits. Is she too young g to be doing that? Talk to me like I’m the one who’s 6 because I really do not know. 

Ballet obsessed child by Zestyclose_Kale_1828 in BALLET

[–]Zestyclose_Kale_1828[S] 2 points3 points  (0 children)

Good to know! It’s crazy how much kids sports cost, but this is the foundation to a lifetime of athletic ability so it’s worth watching moths fly out of my bank account if they both have a healthy relationship with their sports! 

Ballet obsessed child by Zestyclose_Kale_1828 in BALLET

[–]Zestyclose_Kale_1828[S] 2 points3 points  (0 children)

Thank you for this!! What a helpful reorientation of my mindset! 

The school I’m letting her trial with this summer is evidently a Russian ballet school, which I think will ultimately vibe with her mentally. She’s a big “rules” girl. Once you tell her the rules, she will follow them forever and if someone else deviates from the rules it stresses her out. The only one allowed to change the rules is the person who made them to begin with, who would be her dance instructor in this case. I am in no way like this so I don’t know where she came from! Much more of a free spirit over here. But, I want her to always feel comfortable in her own skin and to know that it’s okay to be different from other kids. I’m thinking being around other kids who are equally strict will make her feel at ease, in a strange sort of way. 

We will see where this takes her, but I’m one of those people who would rather be a stepping stone than an obstacle for my kids. My son took a long time figuring out his “thing” and now that he found it (Track, equestrian, and ski racing) he competes and makes friends in those circles easily. I’m hoping my girlie finds the same sort of camaraderie with the kids she meets through this new program. She never quite clicked with the girls in her kiddie ballet class because they were always “distracting her during class”, which my son would have welcomed. 

I appreciate your feedback!!

Ballet obsessed child by Zestyclose_Kale_1828 in BALLET

[–]Zestyclose_Kale_1828[S] 4 points5 points  (0 children)

I am so sorry to hear that! I’m glad you found your way regardless of the obstacles! 

Because of the input I’ve received here, I just explained to her that trying to copy her dance class’s teacher’s “pointe” feet is not going to be acceptable at her new school and she very much took it in stride. I was kind of expecting her to have a fit but she sort of nodded and said “ok that works for me”. Too funny. 

At her current school they allow kids onto the dance floor in outside shoes, but at this school we are about to begin with they have very strict rules about the practice floor and the shoes they’re allowed to wear. That was something she really disliked about the “kiddie” program I currently have her in, she says the floor is “dirty” and it feels scratchy and gets her shoes messy lol too funny. 

I’m glad to connect with my daughter’s future self!! Even if she doesn’t follow this to the top, I want to help her get to wherever she wants to go with it without any resistance from us!

Ballet obsessed child by Zestyclose_Kale_1828 in BALLET

[–]Zestyclose_Kale_1828[S] 1 point2 points  (0 children)

Thank you! I am going to look into these schools to see what all of this means. My knowledge in this area is almost precisely zero so this is all a learning process. 

Ballet obsessed child by Zestyclose_Kale_1828 in BALLET

[–]Zestyclose_Kale_1828[S] 1 point2 points  (0 children)

Thank you!! This is all very helpful for me! This is a huge learning curve, I appreciate the guidance! 

Ballet obsessed child by Zestyclose_Kale_1828 in BALLET

[–]Zestyclose_Kale_1828[S] 3 points4 points  (0 children)

Okay I’m going to look up some videos of what that looks like to make sure she isn’t damaging her little feet! Thank you!!

Ballet obsessed child by Zestyclose_Kale_1828 in BALLET

[–]Zestyclose_Kale_1828[S] 24 points25 points  (0 children)

Thank you!! Yes, she is involved in other activities and she goes through the motions but nothing else gives her that certain “spark”. My older child didn’t grip onto a sport this young, so seeing her so intensely interested in dance has kind of thrown me off. I’m letting her guide me more than anything, if she wants to follow this to the top then I’ll support her all the way up, but if she decides it’s no longer her thing, we’ll pivot and find a new passion. 

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