Jodi
Forum Replies Created
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It’s great to hear how staying active has been so beneficial for you. It’s also encouraging to see how you’ve found a mix of workouts that work for you. Finding that line between doing what helps and being cautious is definitely a tricky dance. Appreciate you being part of the conversation! -Jodi, Patient Advocate
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This is such a powerful reminder, thank you. That line, “Your body doesn’t care that you have MG,” is very true. Your advice about starting small and never pushing to exhaustion is beneficial. Thanks again for sharing what’s worked for you. It helps others feel less alone in figuring out what works for them. -Jodi, Patient Advocate
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That delayed fatigue pattern is very real, and I’ve personally experienced it as well. It can be frustrating, especially when it catches you off guard. I admire your consistency and how you balance exercise with everything else you’re managing. It sounds like you’re listening to your body and doing what you can. Cheering you on! -Jodi, Patient Advocate
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Douglas, thank you for sharing such an honest and powerful glimpse into what it takes to keep moving forward with MG. That big mentality you mentioned is powerful, it’s not about what we have to do, but what we get to do because of these treatments that help us keep living. -Jodi, Patient Advocate
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Thanks for sharing, Greg! Sounds like a big step forward, and we’re glad to hear your first round went smoothly and the nurses were great. Hopefully the new neurologist in September brings some clarity or helpful updates. -Jodi, Patient Advocate
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Those symptoms can make it so hard to stay active with MG.
Have you ever tried exercising in a pool? Some people with MG find that the water helps keep them cool and makes movement feel easier on the muscles. If you’ve tried it, did it help at all with the overheating or breathing? -Jodi, Patient Advocate
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Your story highlights the delicate balance between medications, stress, and symptom control that so many in our community understand well. Wishing you continued stability as you navigate this next phase. -Jodi, Patient Advocate
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It’s encouraging to hear how effective prednisone has been for your symptoms, and your persistence in seeking the right care is a powerful reminder of how important self-advocacy can be -Jodi, Patient Advocate
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It’s encouraging to hear that Mestinon is helping with your speech and swallowing symptoms. Your story is a great reminder that finding what works often takes time and adjustment. -Jodi, Patient Advocate
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Thank you so much for this insightful reflection. Your honesty about the ups and downs and how you’ve learned to listen to your body and let go of expectations is certainly going to help others navigate similar challenges. It’s a reminder that managing MG is about more than just medication. It’s also about mindset, pacing, and self-compassion 🙂 -Jodi, Patient Advocate
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So many in our community can relate to the frustrating cycle of fatigue, brain fog, and stress making everything harder. It’s tough when treatments stop being as effective, but your honesty helps others feel less alone in that struggle. Sending good thoughts your way! -Jodi, Patient Advocate
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Thank you for sharing your treatment journey! It’s incredibly helpful for others to see how MG management can evolve over time. We’re glad to hear IVIG has been making a difference in your day-to-day life -Jodi, Patient Advocate
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Thank you so much for sharing your routine and what’s been working for you. It’s great to hear about your commitment to exercise, diet, and supplements to keep things balanced. -Jodi, Patient Advocate
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The exhaustion and brain fog that few understand is a very frustrating experience. It’s wonderful that you’re still working and staying strong physically, but that doesn’t make the invisible symptoms any less real. We’re here for you! -Jodi, Patient Advocate
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I know many of us can relate. MG fatigue isn’t something a quick nap can fix, and the mental toll is just as real as the physical. You explained it perfectly. -Jodi, Patient Advocate
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It is so true that MG fatigue deserves its own category. It’s not just tiredness, it’s physical and mental exhaustion. And it’s frustrating when others don’t see that. Pacing yourself on the good days is so hard, especially when there’s so much you want to get done. You’re not alone in feeling this way. -Jodi, Patient Advocate
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That must’ve been incredibly overwhelming at the start, especially with the fear of a stroke and not getting clear answers right away. Adjusting your bucket list and holding onto those dreams says a lot about your strength and perspective through your willingness to adapt. I wish you the very best with Ultomiris and hope it brings some real relief. -Jodi, Patient Advocate
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I relate to that. It’s so hard trying to push through brain fog while working, especially with the pressure of deadlines. I’m glad you can work from home, but that doesn’t make it any less frustrating, as you know all too well. You’re doing your best, and that’s something to be proud of. -Jodi, Patient Advocate
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It’s true that how we describe symptoms can change how doctors respond. And as you touched on, many doctors do not associate symptoms other than the characteristic ones as being linked to MG. Glad to hear rest gives you some relief. Sending good thoughts your way! -Jodi, Patient Advocate
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I’m really sorry you’re going through this. It’s so hard when symptoms start affecting things like memory and relationships. You’re right, sometimes all you can do is take it one day at a time. Just know you’re not alone in this struggle, and I’m sure your loved ones are understanding. -Jodi, Patient Advocate
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Thanks so much for sharing, being newly diagnosed is a lot to take in. We are glad you’re here. It’s tough when MG affects something you love. Hoping IVIG helps and that you’ll get back to it someday. We’re rooting for you!
-Jodi, Patient Advocate
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Thank you for sharing your experience with brain fog and its impact on your daily life, especially with the added pressures of traveling and maintaining a high-stress job. It’s promising to hear that you’re finding some relief through healthier lifestyle choices and self-awareness regarding stress management.
I hope you continue to find more effective strategies for managing your symptoms.
-Jodi, Patient Advocate
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It’s fantastic to hear about the positive changes you’ve made since your diagnosis! Transitioning to a healthier diet is not easy. Losing over 30 lbs and dropping two pant sizes is a fantastic achievement. Congratulations! As for your supplements, it’s always wise to consult with your healthcare provider regarding what works best for you. -Jodi, Patient Advocate
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Have you considered joining a support group that meets via Zoom or video call? A few statewide groups connect people from a farther distance, and it could be a great way to find even more support.
-Jodi, Patient Advocate