How Do You Cope?
Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?
For me, the hardest part was feeling unheard before I got answers. What helped most was finding even one doctor who listened and believing my own body. Now I focus on small routines and take it one day at a time. Some days are about surviving, some are about living and both are okay.
I have myasthenia gravis. Bad enough really. It came close to killing me. The downside of the downside is that Iâm seronegative, which make this rare disease even rarer. Worst of all is that all the new miracle drugs for this is not allowed for me.
, that's incredibly frustrating. I wonder if they have available treatments in other countries, that are not available here because the demand isn't high? - Warmly, Donna (Team Member) Â I am also a double seronegative. My Myasthenia Gravis is from the LRP4 antibody. My insurance will not cover certain IV treatments that could potentially help my Myasthenia Gravis but because I'm double seronegative and don't fit into the little box they will not approve the treatments for me. So I only have one option at this time for treatment to try to slow the progression of my MG. It's a shame that the insurance companies want to put everyone in a box in order to provide treatments. We aren't all the same and shouldn't be treated like we are. I shouldn't have to be denied a treatment just because I don't fit in their little box. Prayers for you on your journey.
I a almost 81 and almost two years into my diagnosis of Myasthenia Gravis. I am blessed to have a great primary care doctor abd neurologist who work together to giv
, I am so glad you have a great medical team working with your to manage your Myasthenia Gravis. That's wonderful! And, coincidentally, we do have a sister site dedicated to MG that you are welcome to check out -- https://myasthenia-gravis.com/. Thanks for joining this conversation!
Best, Erin, Team Member., I'm glad to hear that you have comfort and confidence in your doctor. It's so important. How are you feeling? - Warmly, Donna (Team Member)
I donât know why Iâm replying because I donât have a good answer to your question. Iâm searching for ideas I havenât tried. I have two rare diseases and Iâm worn out. Iâm not sick enough to require extra care, thank the Lord, but I canât take care of my life the way I should. I have greasy walls and dirty floors, clutter and a jam packed garage that needs attention. Itâs hard to consider coping when youâre in pain and under water. Itâs depressing. Iâm not clinically depressed, donât get me wrong, I just feel sad about where Iâm at. Iâm 64 and have 6 children who are deep into their own lives. I donât think they realize how much pain I deal with. They do love me but they see me functioning alright in their minds so off they go. I have Trigeminal Neuralgia and Charcot Marie Tooth Disease. Sorry for sounding off but I am watching here to see if I get any ideas as to how to better cope with this. Iâm really trying and have been for a long time. Thanks so much for listening.
 Thank you! I will toodle off to Amazon and get some. Iâve heard of it helping but then again that was from commercials! đ
LaterâŠ, you're most welcome! I hope it works as well for you as it does for me. I take the recommended dose and on bad days I take an additional 2, and that is usually enough to tamp it down to where I can function and sleep.
I get you! I feel like you can't even trust reviews sometimes! I do a lot of research and try the things I can find wide medical research and studies to back it up. Mostly, that serves me well 😀 - Warmly, Donna (Team Member)
