Hi everyone! I made my attempt at blogging once before, but I stopped. I stopped because people were questioning me on if there was really anything wrong with me. I know that's no reason to have stopped, but I did. But I now have a definite diagnosis, thank God! And it just so happens it is a very rare one. And within that I'm even more rare because my body has not responded well to treatment thus far. So I am once again attempting to blog for the purpose of MG awareness. Also, since I will soon be getting surgery and will be in an out of the hospital possibly the rest of my life, I thought this is also a good way for everyone to keep connected with whats going on. I sincerely appreciate everyone who has shown support through the past 3+ years of struggling to find answers as well as everything else going on in my life. Please, ask questions, say hi, check my blog often, promote awareness. I just ask that you don't say anything negative on here. I've been trying very hard to be more positive and stay encouraged through all of this. This is not a place to bring me down but a place to become aware of my disease and help me through it if you so choose.
It has been brought to my attention that posting a comment on here isn't the easiest thing... sorry about that. I didn't realize it, but it looks as if you need an account with one of the things listed (google, aim, livejournal, etc) in order to post. So my suggestion is if you don't have any of those either create one just to be able to post, or email or facebook me. I'll still be checking email and facebook, but while in the hospital, it is going to be a lot easier for me to update one main site than respond to each individual email.
I have created several different pages you can find links to on the top to give you more information on what Myasthenia Gravis is, my story, how you can help and questions and answers you may have.
Also, please note nothing said here is to be taken as factual medical advice for treatment, diagnosis or otherwise. I am not a medical professional and everything stated should be only taken as my own insight on this. Thank you for reading!!
Hello my mother actually sent information about your blog to me. I have myasthenia Gravis and have had it for 30 years. I do understand your frustration unfortunately because myasthenia is rare and almost no myasthenic behaves in the same way; what works for one may feel like death to another.
ReplyDeleteBecause of this, it can feel like your medical professional is guessing. I have had pretty much all of the treatments you describe plasmapheris, IVIG, Mestinon, Prednisone, Imuarn, Cytoxan, Cyclosporine and methotraxate. Let me know if you have questions. I will answer based upon my experience. Abby
Hi Abby!
ReplyDeleteThanks so much for your message and for reading my blog! I appreciate you sharing your experience with MG. I'm also glad you were able to post as I've heard a lot of people saying it hasn't been working for them. Stay strong in your fight against MG!