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!!!
We are going to be in Chicago on Monday the 21st of this month until Wednesday for 5 months follow up with Dr. Burt. A month ago new symptoms started to come out, feels like a relapse, but who knows! So, got a call from Dr. Burt and he asked me to come in. So here I come! While we are there would love to meet anyone and everyone who is there in Chicago. Please, see the video and leave a comment if you are available or would like us to come by.
So…4 months post HSCT. I think for a lot of people, can’t speak for everyone, issues do come out after month 3. I happen to be one of them. Perhaps it is due to steroids wearing off or chemo, I don’t know, it is not my field of expertise but it does happen. My balance has started to shift again, the gate of a puppy or a baby, looks funny. Legs feel like led, by the end of the day I truly do not want to move. The crazy fatigue is back into it’s full force, some days it is truly worse then others. UTI is back, woot! I suffered from incurable UTI prior to transplant, and seriously it was incurable, I could take huge dosages of antibiotics for it to return in two weeks time at best. So here we go again!
I am going back to Chicago this month to see Dr. Burt. He called me out of the blue asking me questions and wants to see me now, to evaluate the current situation, lets hope this is not a relapse, hope…
But hey, it’s life, it throws curve balls at you and I take it, one hit after another, sometimes I even come out stronger, and sometimes it takes me down, down on my knees, whipping, begging for it to stop. Bring it, I take it, I can do it all, right? Yeah…sometimes I can. We are all allowed to be weak once in a while, otherwise, we fight, we move forward and we make lemonade out of lemons.
This post is for the ladies, and gentleman those of you that might be effected as well by multiple sclerosis.
As many of us know the struggle is real and has effected our sex lives. Does it get better, do you get the feeling back?
For me it did, oh it is so nice to have the feeling again 😀 I hope it is the case for many.
Menopause is a nasty bitch and got to ride that wave.
Here is a short video for you all, sexpost HSCT and I would love to hear your story. Please, leave a comment!
I have been short on updates lately, sorry.
So we decided to record this video to talk about end of the year results, current and not so current events.
Fired, new job, legs and general life. All is there. And of course
So, post HSCT Day +29. Feeling…good and bad?
I see improvements once I get past the unpleasant symptoms.
Positives: walking better, peripheral vision in the right eye is coming back. I would say that is remarkable: beating MS.
Unpleasant symptoms: dizziness, shortness of breath, chest pressure, GI problems, nausea, lethargic.
I would say the positives out way the unpleasant symptoms.
More of everything in the video.
Love Always and forever grateful to Dr. Richard Burt and the whole team of Northwestern,