My MS/HSCT Journey

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 ...

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...

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 frustra...

All went well today with my 3rd infusion and probably my last. I was pretty tired and ended up sleeping through it although a few times I needed to drag my IV along to the bathroom. I was very very tired this time.

It hurt the most 09/2023 So, after being diagnosed I imagined the most horrible things happening physically. I didn’t expect the things that would happen mentally. I didn’t expect withdrawal or depression. The depression I had was never to the extreme before. It was the depression that had you looking at your gun as a backup plan. I believe now that I wouldn’t have gone to the extreme but I don’t know what kind of potential those thoughts honestly would have had. It did up having the opposite effect though. I was and never have been suicidal. I have always been a pretty optimistic person. I remember having the biggest relapse and being full of hope. Numb, but full of hope. The depression hit me when I thought I had caught the relapse early. It must have been a severe chemical imbalance because, I swear, the steroids fixed it right away. The next day I really noticed a change. It was like a switch flipped. I wondered how I could go down such a dark thought process. I knew it was complet...

https://www.facebook.com/YrekaNews/videos/1687758981624864   https://fb.watch/lpApuq6g3A/ I need to go home right now. At home, we are under advisory evacuations for the Mill fire in Siskiyou County and we are in an evacuation zone. Earlier this year we had another fire that had half the town under mandatory evacuation. It was very scary. Right now, it is only under advisory but it could escalate to mandatory at any time and I worry that my mother-in-law will not be able to get all the animals vacated by herself. I don't want to be here and I know they can just prescribe prednisone and release me. I promised the doctor that I would return to the ER if my symptoms worsen or if the steroids don't work. Now I need to wait for my husband to get here and take me home. Okay, so the fire is quite a ways away but fires move very quickly and I believe that is why we were under advisory. It seems that evacuations are lifting so that's good. A friend of mine's house did burn down ...

Today I went to the emergency room. I called my MS specialist and told the nurse that I thought I was having a relapse, who then relayed a message to my MS specialist. They told me that I needed to rule out an infection. I had an appointment today at the gyno so I asked them to test for a bladder infection or a UTI. I don't usually get bladder infections or UTIs but I figured it wouldn't hurt to check. It came up normal. 😔 I know that means I relapsed so I decided to go to the ER because they can give me prednisone. My last infusion was in April 2022. I should be okay since it's only been 4.5 months and these infusions should keep me safe for 6 months. However, several days ago I woke up feeling something was off. This all started on August 27th with hand weakness and trouble speaking out loud. On August 28th, the sensation in my right hand was off and weirdly numb.  Currently, I am having a hard time staying focused on my school assignments. So, I have been reading out lo...