Tuesday, August 23, 2016
I went to the Shepard Center today to have a physical therapy evaluation for my ms. First, I love that place. They care about people there. They got to study me and see what things I can improve on with pt. I do have right drop foot and will be testing out http://www.bioness.com/Products/L300_for_Foot_Drop.php a bioness unit. I also have weak ankles. I walk on the inside of my feet so to speak also. One of my goals is to keep walking some and maybe improve it. They also said my walker is not tall enough and the one I have it for a short person. I'm going to do whatever I can to get better.
Wednesday, August 10, 2016
Tuesday, August 2, 2016
Today I had my first post hsct infusions done today at the Shepard Center in Atlanta. Let me tell you what I need them.
Rituximab follow up infusions are "suggested" by Mexico, but not mandatory. From a prior post. . . . Regarding the post-HSCT Rituximab infusions offered by Clinica Ruiz that I will add some relevant info. First the rationale. . . . it has been discovered in the clinical trial work (mainly out of Dr. Burt's outcomes in Chicago) that a fraction of MS patients undergoing non-myeloablative HSCT appear to relapse at some point following the transplantation. Dr. Burt's approach is to retreat such relapsed individuals by administering six additional doses of outpatient cyclophosphamide, although other lymphoablative agents (such as Rituximab) are also likely to be effective. The difference with Dr. Ruiz is that his philosophy is to be proactive instead of reactive and suggests additional post-HSCT infusions as maintenance therapy, or a "booster" if you wish to attempt prevention of failure *before* a possible failure in the minority of patients in which it might otherwise occur. However, clearly not everyone will need it, but it's impossible to predict beforehand who *will* need it so Dr. Ruiz just suggests it for everyone. And the dosing (100mg) of post-HSCT Rituximab (on top of the single high dose of Rituximab administered as part of the transplant) is a gentler approach compared to more cyclophosphamide (which is very harsh) so that the patient will have few, or no side effects with the Rituximab retreatments. This is why he suggests the Rituximab, although it is not mandatory nor does skipping the infusions lessen the effectiveness of the transplant as an isolated treatment in comparison to any other HSCT facility.
Let me update you on how I'm doing. I was warn about the roller coaster after HSCT. The goal of HSCT is to never get any worse and I have not. As of now the progression has stop. Everything else that I get is a bonus. My brain fog is a lot better. Using the bathroom has greatly improved and I can tolerate the heat much better now. I can still only walk for about 15 mins at a time. I still fall down sometimes due to my right drop foot. Im still fighting my ms, but I now more time and the progression is stopped. My hair is slowly coming back. I'm sleeping a lot more than ever. I fell like a new born baby. It can take years to see any improvements if any at all.
I dont give up and I'm going to give this everything that I have. My goal has been reached. I dont see me in that wheelchair anytime soon and still hoping for improvement in my walking. None of this is easy, but GOD knows I can handle it.
I have also started www.nomsingaround.com to help others that have MS learn more about hsct.