My MS/HSCT Journey

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Dr. Burt's Clinical Trial for RRMS Part 4 - Better Late than Never

Today was my consultation with Dr. Burt. I kept thinking at least you are going to meet him. You are going to meet the pioneer of HSCT. I never knew what star struck was but I was immediately hit with it and my mind went blank. He was so passionate about his work. You could tell by how he explained everything in such understandable detail. All the things I had learned about MS suddenly went blank and he turned into my new teacher. I listened intently as he explained HSCT and sudden platelet drop and soon he said something magical. He said he believed HSCT would benefit me. He accepted me as a patient and he even discussed my treatment with my MS specialist. I was floored. I was relieved. I was in such shock that when he asked me if I had any questions, my mind was empty. I had some questions but really wasn't ready. Usually at appointments like these, I have a list of questions and at the end of the appointments, I go through each one quickly but this appointment I hadn't don

Dr. Burt's Clinical Trial for RRMS Part 3

I feel like a bomb just fell on my head. I just talked to Dr. Burt's nurse who told me that Dr. Burt doesn't think I would be a candidate after all. I cried. I am devastated and just feel beyond defeated. I will just have to try Mavenclad and if that doesn't work I will go down to Mexico and get HSCT there. Tonight, I give up though. I just don't understand. He still wants to consult with me. I told her that his time is valuable and that if someone qualifies for his trial then I don't want to take up any more of his time. His time is precious, especially to someone worse off than I am. She insisted that I meet with him and talked me into it with a virtual appointment. Even the word deflated is an understatement of how I feel. I feel absolutely gutted and bled out and tomorrow is my birthday. 😞😭

Dr. Burt's Clinical Trial for RRMS Part 2

I am so excited. I have just been told that Dr. Burt thinks that I am a possible candidate for the study at Scripps. I have been terrified that this is too good to be true but it is. I feel so relieved. I may be able to finally put this all behind me or at least be able to get back to life for a while rather than this sick joke I have been living. I am so happy.

Dr. Burt's Clinical Trial for RRMS

Today I decided to email Dr. Burt's Clinical Trial for RRMS. Last year Selma Blair m ade the news for putting her MS into remission. I dug into that once I heard about it. It sounded promising but I know there was no way I would be able to get that treatment. She is a celebrity with access to the best doctors in the world. Over time I found out who her doctor was. At first, I thought it was Dr. Nash in Denver Colorado but later after her film, Introducing, Selma Blair, I learned it was Dr. Richard Burt in Chicago. Recently, I read his book, Everyday Miracles, and thought why not? It obviously isn't working out with the Beat MS trial since they won't respond and left me in the wind... I am so discouraged about that whole thing but with this one, what do I have to lose? They probably won't respond but we will see what happens. Here is what I wrote to them; My name is Julie. I am an active 33-year-old and live in rural Northern, California. I am a student at Arizona State

What's Next? Appointment with my MS Specialist

Today I met with my MS specialist and as suspected, she wants me to discontinue Rituxan because of the breakthrough activity. We discussed that I have a history of right hemiparesis, right hemibody sensory changes, right foot drop, and T2 hyperintense lesions. I have had very active MS since diagnosis. After discussing a few medications and treatments such as HSCT or Hematopoietic Stem Cell Transplantation. We discussed Lemtrada but she didn't feel that I should take it due to cancer being in my family. We also discussed Tysabri but due to being JC-positive, I am unwilling to try it due to PML risk. She suggested Mavenclad which she said would reset my immune system kind of like HSCT. She also suggested I look into clinical trials like the BEAT-MS study. She said she thought I would qualify and told me where to apply for the clinical trial. She also said that she wanted me to start Mavenclad once the Rituxan was done on Mid March to early April. This has been a difficult and overw

Beat MS Clinical Trial

So, I emailed the BEAT-MS clinical trial, and I was told to send them a medical release form but rather than waiting an additional two weeks I called the medical records department and had all of my medical records faxed directly to them. The lady from the BEAT-MS Recruitment Team was actually surprised and said told me that she would review them and so long as everything looked good, she would send them to the principal investigator in about 2 weeks. She was super helpful and very nice. On November 4th she messaged me that she sent my medical records to the principal investigator of the trial at OHSU which would take about a week to review. This was great and felt like everything was moving very quickly. On November 30th, I had still not heard from OHSU and reached back out to the recruitment team. She told me she reached out and they said they would be contacting me very soon. By December 8th, I still hadn't heard anything and reached out again. The coordinator was frustrated a