So here you go.
Yes it can be Secondary, or it maybe an infection.
He does want me to take antibiotic for a year to clear up my chronic infection. By the end of the year I will have a hole in my intestint, woot! Maybe but I got to do what I need to do. Within a month I will know if it is an infection causing my legs to worsen or I am progressing. We shall see. Here is our entertaining video as always.Watch me
Hello All,
Been a while, my fault. We have two takes for the video as Sergei thought the first one wasn’t happy. So pick whichever one you want to see or both, suppose second one has more content. These videos shot before we have seen Dr. Burt. Lots of nervous jitters, lot of unknows to this follow up.
I also would like to remember Karen Bryan. It is hard to believe that she is gone. Scleraderma took her life, but it didn’t win over her. May she rest in peace.
So it’s been a while. Life goes on. Really don’t have much to complain about, regular ups and downs. Good days and bad days, more good than bad. When it’s bad – it is bad and it is scary but then it gets better and life is good again, watch my update. I’ll be forever grateful for having the transplants and here is my update to 2 years and nine months post stem cell transplant with Dr. Richard Burt. Love you guys, we’re always here for you!
Love Always,
Lana and Sergei
Hello peeps!
Realized today that I have not updated my blog.
Met with Dr. Burt and Dr. Balabanov last week on Wednesday.
I stressed my self out to the point where I had ice pick headaches, pain in my ear, just drove myself nuts. It was truly scary, did it work, did I do this for nothing, what if I still have active lesions and on and on. Sergei was thinking same thing, making plans for what if.
So my appointment day. I do not even remember what Dr. Burt said or asked. I just remember him sitting down and saying no new activity and old lesions shrinking. That moment I collapsed into Sergei’s arms and tears poured out. So much relief, bricks fell off my shoulders. HSCT, stem cell transplant worked, sweet words of remission. Since my diagnoses I have not been in remission, it was a relapse after a relapse. I do not have enough sufficient words to express accurately how it feels. It is surreal, I can dream of things I use to dream, I have a chance at life without limitation. Feels unreal.
Met with Dr. Balabanov next, he confirmed what Dr. Burt said, he was elated with how well I am doing. My EDSS score dropped down so significantly.
With all of those news, I do have to see a bone doctor and get an MRI on my hips. Steroids and chemo might have did them in, hip replacement is one of the options if it will be confirmed. However, I am not looking to do it until I cannot move!
The news of remission cannot darken anything, I can live with bone pain, I am not progressing, I am regressing 🙂
So news are fantastic!
Thank you to everyone for your support, all the kind words,to everyone who lifted my spirits and showed me so much love, Thank you!!!