Yes, with two autoimmune diseases and multiple other diagnoses related to those diseases, I always have this cloud over my head, wondering when another shoe is going to drop and how bad is it going to be.
Hi Elaine...so sorry that you have found out that you have yet another health thing to deal with. I guess the good thing is that someone caught it and it can be treated. I know you will go foreward with the courage and cheerfulness that you have shown thus far. I will include you in my prayers.
Thank you for your kind words and prayers! There is a silver-lining, there is treatment and hopefully a cure. Thank you for being here through Vlogtober! Hugs, Warrior! ❤️
It took five and a half years of testing to get my diagnosis. When I got it I had almost given up trying to find it - that's how I felt about it - *I* had to solve it myself, because the medical professionals never had the time to look at the whole picture (I had so many different things going on and they tended to focus on just one or two out of my 10+ symptoms). So before the appointment that lead to my diagnosis, I talked to my doctor on the phone and was like, "there is one diagnosis left that I think could explain all my symptoms, it's a diagnosis of exclusion, and I think we've done enough of that to finally have a look at it". He made the time for me (I got 2 whole hours! Usually it's just 45 minutes) and we went through it, and sure enough, I have it. I have ME, I have Myalgic Encephalomyelitis. I had suspected having it for quite a while, but because it is a diagnosis of exclusion, it wasn't possible to get before I had went through the whole chain of testing for other things. And had I not pushed for it, I still wouldn't have an answer - most doctors know so little about it, they wouldn't even consider it. Getting it felt unreal, I had gotten so used to not knowing, having an answer felt like it was wrong somehow. I was so used to getting negatives and having to reset and start over. I felt hollow, I felt confused, I felt like a fake. Totally dumb in hindsight, but that's how I felt. Getting my ME diagnosis didn't get me access to anything at all the day I got it. Just a word for what I have. Like I said, most doctors know very little about ME and there are no specialists. I went home, did my own research, found a medicine I wanted to try, and called and asked for it. Now here I am two and a half years later, still on that medication and I feel so much better. It makes me feel so sad that this is how things are for people who have ME in my country. If I hadn't solved my medical mystery, I wouldn't have a diagnosis. If I hadn't done my own research and asked for my medication I wouldn't feel better today. It horrifies me that people like me, who are not as driven as I am, could be where I would have been if I hadn't been doing my own research - without answers and without treatment. It's really not okay at all... I manage my own disease. I am my own doctor. I have no medical education except what I have learned myself. It shouldn't be like that. People like me should have access to professionals who know how to help us.
Hi sister my sister is having autoimmune disease and sge took 4 dose of rituximab...how much time remission u had and how many rituximab u... took...please reply from india😢
Hi my friend! I have not found remission with Rituxan but I have seen stabilization. It took about 6 months to notice improvement and stabilization came soon after. I’m sending your sister extra strength! Hugs! ❤️
Yes, with two autoimmune diseases and multiple other diagnoses related to those diseases, I always have this cloud over my head, wondering when another shoe is going to drop and how bad is it going to be.
It is a hard thing to live with. I totally get where you are coming from. We are strong people! Sending you extra strength and extra spoons today! ❤️
Hi Elaine...so sorry that you have found out that you have yet another health thing to deal with. I guess the good thing is that someone caught it and it can be treated. I know you will go foreward with the courage and cheerfulness that you have shown thus far. I will include you in my prayers.
Thank you for your kind words and prayers! There is a silver-lining, there is treatment and hopefully a cure. Thank you for being here through Vlogtober! Hugs, Warrior! ❤️
It took five and a half years of testing to get my diagnosis. When I got it I had almost given up trying to find it - that's how I felt about it - *I* had to solve it myself, because the medical professionals never had the time to look at the whole picture (I had so many different things going on and they tended to focus on just one or two out of my 10+ symptoms). So before the appointment that lead to my diagnosis, I talked to my doctor on the phone and was like, "there is one diagnosis left that I think could explain all my symptoms, it's a diagnosis of exclusion, and I think we've done enough of that to finally have a look at it". He made the time for me (I got 2 whole hours! Usually it's just 45 minutes) and we went through it, and sure enough, I have it. I have ME, I have Myalgic Encephalomyelitis. I had suspected having it for quite a while, but because it is a diagnosis of exclusion, it wasn't possible to get before I had went through the whole chain of testing for other things. And had I not pushed for it, I still wouldn't have an answer - most doctors know so little about it, they wouldn't even consider it.
Getting it felt unreal, I had gotten so used to not knowing, having an answer felt like it was wrong somehow. I was so used to getting negatives and having to reset and start over. I felt hollow, I felt confused, I felt like a fake. Totally dumb in hindsight, but that's how I felt.
Getting my ME diagnosis didn't get me access to anything at all the day I got it. Just a word for what I have. Like I said, most doctors know very little about ME and there are no specialists. I went home, did my own research, found a medicine I wanted to try, and called and asked for it. Now here I am two and a half years later, still on that medication and I feel so much better.
It makes me feel so sad that this is how things are for people who have ME in my country. If I hadn't solved my medical mystery, I wouldn't have a diagnosis. If I hadn't done my own research and asked for my medication I wouldn't feel better today. It horrifies me that people like me, who are not as driven as I am, could be where I would have been if I hadn't been doing my own research - without answers and without treatment. It's really not okay at all... I manage my own disease. I am my own doctor. I have no medical education except what I have learned myself. It shouldn't be like that. People like me should have access to professionals who know how to help us.
Hi sister my sister is having autoimmune disease and sge took 4 dose of rituximab...how much time remission u had and how many rituximab u... took...please reply from india😢
Hi my friend! I have not found remission with Rituxan but I have seen stabilization. It took about 6 months to notice improvement and stabilization came soon after. I’m sending your sister extra strength! Hugs! ❤️
I can relate to being overwhelmed with one more thing. 🫶🏻🙏
I knew you all would know the feeling. Thank you for your comment and for spending Vlogtober with me. Hugs! ❤️