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Oh wow 20 years! That's wild! Is Ultomiris an infusion like IVIG?

No problem, I'm glad it was helpful! Definitely advocate for yourself! <3

It took 2 years for doctors to figure it out! I had so many symptoms that just seemed like disconnected things and every test I had done was negative. I have video about my MG story where I talk more about how I was finally diagnosed!

I'm doing pretty well now! Not back to the way my life was pre-MG, but it's pretty well under control and I can still do all the things I used to, I just have to make modifications. I'm hoping to have more videos soon! I have some recorded already an just haven't edited them yet :(

Oh wow I'm glad they started you on IVIG so fast! Has it helped so far?

Thank you! How did your thymectomy go?

@kristinasnowflake Thymectomy went as well as can be expected; thanks for asking. High Pain for about 2 weeks. I got 3 plasmapheresis sessions before the thymectomy and felt slightly better. Though after the thymectomy felt like didn't have MG any more. Though they did give me some steroids and mestinon before waking me up (smart). My thymectomy was on 21st may. After 2 weeks started feeling MG symptoms. The weaknesses in raising my arms towards the back, weakness building up in my Abdominal area and forearms. I'm not on mestinon yet, just trying to see how it goes. My doctor wants me to start on prednisone 20 a day and cellcept

Any views on this?

I'm sorry, that's so scary and frustrating!! I got a lot of the same symptoms for a long time and I used to have to stand up and teach all day also! Do you have any meds or treatments that help now?

Yes!!

I've even had the folks at the airline grilling me when I ask for preboarding. One guy had me in tears while I was trying to explain, I know you don't serve peanuts-but you don't stop folks from bringing their own either. I need to clean the seat to ensure I don't have a reaction but also cause I WILL and have given myself an anxiety attack while boarding out of sheer stress. 🙃 like fck off man. Do you really think I want to spend more time in this metal tube than I really have to?

All of those are totally valid reasons for needing preboarding! I realized after I mentioned mobility that there are so many other things we could mention. I never thought about allergies until my last flight I preboarded with a mom and daughter who were getting on to disinfect because of a peanut allergy!

Omg UGH I'm sorry he reacted like that! Wtf I thought they weren't even allowed to ask why we needed preboarding!

Exactly!

@@kristinasnowflake I don't think they are, but when I recounted the conversation to my family later it sounded like he was having a power trip thinking he could "call me out" for being entitled or something. I did end up having a meltdown that trip 😅 I wish more folks were more empathic, the sheer horror stories I've heard from less abled and higher support needs friends really makes me want to hermit. I appreciate humans like you who are able to be camera facing and to talk about the struggles. I have met a few really kind beans who recognized my meltdowns for what they were because of a video or tiktoker and were more aware instead of judgmental. Gives me hope that overall people are good ♡

Hi, I'm sorry I didn't see this sooner! How is your dad doing? Were they able to get him any treatments in the hospital that helped?

Good luck!! How did it go?

Thank you, I'm glad it's helpful!! Did you start IVIG already? Has it helped?

Oh wow I'm sorry! I know it often starts with the eyes but can spread pretty fast. Do you have any meds now that help? For me, the tingling goes away when I take Mestinon!

Really good!! I still take basically the same meds, but lower dosages. I feel almost normal a lot of days, but I still have to be really careful with being too physically active, standing too long, or traveling. It's still up and down, but I'm doing so much better now than I was before!

Ugh I totally agree with you that it's "normal" but I hate it lol. Are you still doing the IVIG? Switching to subcutaneous for me was a game changer, no side effects at all anymore!

Good luck, I hope yours goes well!! One of the best things I had was a set of wedge pillows for bed so I could lay on my back but elevated. I used them almost every day for 2 or 3 weeks! Also I recommend having a tray next to your bed that has anything you might need--your meds, a water bottle, the spirometer, snacks, a book, phone charger, etc. Even though you're walking around occasionally, I found that once I was in bed and comfy, I did NOT want to move lol, so having everything nearby was nice! Oh and also if it's possible for you to have your groceries or meals delivered, highly recommend!

Aw I totally understand, just the idea of chest surgery sounds super scary. My surgery went really well and I'm glad I did it, but I know it's not for everybody!

IVIG isn't blood! It's considered a "blood product" because it comes from blood, but they basically just removed the good antibodies from blood donations and then the infusion you get is the antibodies, not the blood itself.

@@kristinasnowflake I’m asking because it seems like adding volume to your blood would increase your blood pressure

@@JeoJetsonmusic For IVIG, you're monitored by a nurse for the entire infusion and they periodically check your blood pressure to make sure it's normal! If I remember correctly, my nurse would check my blood pressure every 30 minutes to an hour during each infusion

I suffer GBS. 36 ivig injection

Thank you for watching and commenting! That's amazing that you went to learn more about MG! Since it's so rare, I feel like we often end up having a team in the hospital that isn't familiar with it which can be frustrating and sometimes unsafe when we have to explain symptoms and contraindications. I feel so much safer and more relaxed when someone on the team is familiar with MG and I'm sure your future MG patients will feel the same! And thank you for the info on the IVIG! I ended up doing 2 more rounds but got aseptic meningitis 2 out of 3 times, so I started Hizentra subQ infusions instead and have been on it ever since!

Possibly, but everyone is different! I noticed a small but significant difference right after my thymectomy and then it took a couple years to really feel the effects. I've also been able to lower my prednisone dosage and I'm down to 5mg now!

I also wanted to ask..you said you were going to make a video about tips and what not to do and what you wish you did..I haven’t found that video..am I not seeing something? Thanks!

Thank you! I started making videos because I ran into the exact same thing you said, that it's really hard to find real-life MG experiences from real people. Has your swallowing gotten better? My swallowing symptoms were different but I can definitely see how that might be MG.

Hi! So I'm awful at keeping up with making CZcams videos, but I recorded the whole thing and never finished editing it! :( My Hizentra infusions did change recently though so I'll have to update soon for sure!

I'm so sorry I don't really have good recommendations :( The only thing I could suggest would be to check the Myasthenia Gravis Foundation for a list of MG specialists. I found my neurologist on that site and he's been amazing!

@@kristinasnowflake Hi! Thank you, I'll check it out. 💚

Good luck! It's definitely worth asking about. I couldn't believe it when I tested negative but all my symptoms matched, and I was glad my doctor kept digging!

Never lose hope! ❤️ It's been a couple years since this video and I'm doing a lot better now than I was then. Staying positive helped me a lot!

Of course, I'm glad it's helpful! How is your daughter doing since getting diagnosed? Did they give her any meds to help?

@@kristinasnowflake Right now she’s on Mestinon. The first time she took it she hadn’t eaten anything and experienced extreme nausea. She’s good now and it has helped with the symptoms.

That's such a good question! That research is relatively new and scared a lot of people in the MG community, but a lot of people are missing these details from the full text: "This effect was preserved after the EXCLUSION of patients with preoperative myasthenia gravis, patients with preoperative thymoma, or [...] autoimmune disease taken together." This is repeated multiple times throughout the study in regards to each risk they assessed. Any long-term risks of thymectomy that were found ONLY applied to people who do NOT have thymomas, MG, or autoimmune diseases. Those patients had other non-thymus related surgeries (like heart surgery, lung surgery, etc) that also took out the thymus because it was deemed to be inconsequential. So the short version is, if nothing is wrong with the thymus, we probably shouldn't take it out because there could be long-term risks--If it ain't broke, don't fix it! lol. But for those of us who already have MG or thymomas, those long-term effects don't apply to us because it IS broke and we probably SHOULD fix it, lol. I hope that's helpful! Here's the full text of the research if you're interested: www.ncbi.nlm.nih.gov/pmc/articles/PMC10557034/

@@kristinasnowflake thanks for the reply and I mean no offense, but I think you may be misinterpreting the statement. The do mention several times that the increase in mortality and cancer risk was consistent even after they exclude data from people with MG and thymomas as well as infections, but that is not to say that the risk was not present for those groups, but instead to prove that the risk held true even after you removed those groups from the data set because people with MG and thymomas could be seen to skew the data since the have preexisting autoimmune illness and cancers. In fact if you go to the new England journal of medicine and look at that version of the study you can read the letters that other medical organization have written to them. Duke sent a letter with concerns about what impact this study might have for patients with MGand stating they did not see this increased risk, and the authors of the study replied which you can also read. "Our study evaluated risk in a diverse group of patients undergoing thymectomy for a variety of indications. In our subgroup analysis, we found that the magnitude of the risks of cancer and death were preserved regardless of whether we included or excluded myasthenia gravis or benign or malignant thymoma". This would suggest the risk holds true for people with MG and thymomas as well as those who have had a thymectomy without those conditions. I absolutely understand why you would choose to have a total thymectomy in your case with MG given the data on total thymectomy and the relief of MG symptoms, but in my case with a small and non growing thymoma, I think it's something to consider. I would really like to preserve as much of the thymus tissue as possible but most surgeons just want to remove the whole gland.

@@kristinasnowflake strange. I replied and it wasn't there when I checked back.

@@pissoff247 I don't see another reply either; just your first comment!

@@kristinasnowflake thank you for your reply and I mean no offense but I think you may have misinterpreted that statement. They do mention that the risk is preserved after the exclusion of people with MG and thymomas, but that is not to say the risk is not present in people who have those conditions, but instead to show that people with those conditions do not skew the data because they have preexisting autoimmune conditions and cancers. In fact if you go to the new England journal of medicine and read the version there you can see letter that other medical organization have sent to the author and the author's reply. The author states in their reply, "Our study evaluated risk in a diverse group of patients undergoing thymectomy for a variety of indications. In our subgroup analysis, we found that the magnitude of the risks of cancer and death were preserved regardless of whether we included or excluded myasthenia gravis or benign or malignant thymoma" This means that those increased risks of cancer and all cause mortality are present for people with MG and thymomas as well. In your case I absolutely understand why you would choose to have a total thymectomy given your MG, but in my case with a small non growing thymoma and no MG, I think this information is something to consider . I would like to preserve as much of the thymic tissue as possible but most surgeons seem to just want to remove the entire gland.

Oh wow that's amazing that you're in remission!! It's good to know you have the meds if you need them, but I hope you stay in remission! Life goals! lol

What did you do to go into remission?

Hi! Sorry I missed this comment for so long! Were you able to start on the meds? Are they helping at all?

Hi, sorry I missed this comment sooner! I didn't have any problem getting the IVIG approved because the insurance went by the MG diagnosis and not the antibody tests. There are some treatments that you can usually only get if you have positive antibodies (like Vyvgart!), but I was able to get the Octagam brand of IVIG with just an MG diagnosis.

Good luck with your surgery, I hope it goes well!! Honestly it wasn't as painful as it looked! I was definitely uncomfortable throughout the recovery, but I was diligent with staying on top of my meds for the 3-4 weeks after and it wasn't too bad. My symptoms are actually really good now! Not back to 100% my old self by any means, but I don't have any trouble getting through my normal day to day anymore. Flares are much less frequent, and I've been able to come down in my steroid dosage. I'm so glad I had the surgery!

I got Penn Medicine in the city! There are multiple doctors who treat MG there, and I see Dr. Sami Khella. The only thing is that the wait list is insane! When I made my first appointment, the wait list was 10 months (!!!!), but because my doctor had referred me because she suspected MG, they were able to fast track me and get me in after only 2 months. I also know someone local with MG who has gone to Jefferson for years and is really happy with her treatment, so that might be a good option too!