Looks like it is time for an update! So much has happened since my last post, and I want to make sure I share it with all of you. I have been given some great hope in regards to MS, and feel very thankful for that.
I am continuing to have numb feet, and some days are better than others. Today my legs feel not great at all, in fact, I almost tripped coming up the stairs at work today because I thought my numb foot had cleared the next stair and it hadn’t. I am thankful that the painful cramping and spasticity I was having seems to have been put to rest. It’s strange, but in the last two and a half years I think my feet have been numb more than I’ve been able to feel them. People always ask me how I do it with numb feet, but it’s not really a choice, it’s what I’ve been dealt so I make it work.
In my last post I wrote about the information I had sent to Chicago in regards to an evaluation for HSCT. Well, I had that evaluation with two doctors in Chicago on June 30 and July 1. I first had a bunch of bloodwork done and then the world’s longest MRI on June 30. I was literally in the MRI machine for an hour and a half. While lying in there I started to think the technician had possibly gone to lunch and simply forgotten I was in there! The funniest thing about the MRI in Chicago, to me, was that I had to go through a metal detector before going in. The thing would not stop going off, even though I KNEW I didn’t have any metal on me. I’ve always been told I have a magnetic personality, maybe that was it 😉
On July 1, I met with Dr. Burt, who is the doctor conducting the trial. He was a super nice guy. I was able to go over my medical history with him, and he was able to tell me that I have two new enhancing lesions on my brain since my last brain MRI. While this is certainly not GOOD news, it is welcome because it helped to ensure that I would be a candidate for Dr. Burt’s trial. Towards the end of my appointment Dr. Burt he told that he thought I would be a candidate for the study, but he would have to discuss it with his colleague, Dr. Balabanov, whom I would be meeting later. The very last thing he told me was that he liked my personality, because it seemed to exude positivity. I left that appointment feeling pretty good.
After my appointment with Dr. Burt, we hopped in a cab and made our way to Rush Medical Center to meet with Dr. Balabanov, a neurologist who specializes in MS. Once again, I really liked Dr. Balabanov. He gave me a thorough neurological exam and at the end agreed that he thought I would be a good candidate for the trial. This was a huge relief. I just had to wait for the official call at this point.
So, overall, my trip to Chicago was a HUGE success. I didn’t hear back from Northwestern for two weeks, but when I did, it was official: I have been ACCEPTED as part of the clinical trial for HSCT. Woah…This was exciting and terrifying at the same time. Having a stem cell transplant will allow me to stop the progression of MS in my body, something that I could only dream about when first diagnosed. However, it will be a long road getting there!
I have some wonderful friends who have started to plan a fundraiser to help offset the missed work and out of pocket costs I will have and I have also set up a go fund me. The financial aspect of the entire thing is terrifying. So, if you read this and want to or can help, keep your eye out for fundraiser details or visit: www.gofundme.com/kellytapperHSCT
I plan to document my entire journey. I’m just waiting now for insurance approval, which once received will send me back to Chicago. I will go for a week of testing at that time. So keep me in your prayers and positive thoughts, as all of that seemed to work the first time! I can’t believe that this blog is going to become a tale of how I once HAD MS instead of the documentation of a lifetime of struggle.
#ChicagoOrBust #StopMS #MultipleScrew-This