I hope everyone had a yummy feast yesterday. I had a very nice dinner with my mom, stepdad, sister, brother in law and my daughter. We were a small group but still shared many laughs and lots of love. There were a few things I found humerus because you have to laugh when you have MS: It was the first time I was using the ramp at my mom and stepdads home. There are three ramps in all and the…
My doctor appointment went as expected. I will be continuing on Rituxan for the foreseeable future. There really is nothing on the market for me to change to at this point. The question about me getting worse, isn’t really a question, it’s more of a fact. That is what secondary progressive MS is, it’s steady decline or worsening of symptoms. That is what I have and they are really no drugs for that, at least for me. Mayzent Is on…
Today is my mom’s birthday, 3 days before mine. Happy birthday mom!!! My birthday is here again. Came fast. My lucky day and number 22. I have no plans because we celebrate my birthday on Thanksgiving. That has always been the tradition. Actually we celebrate both our birthdays on thanksgiving because we are together. This year will be no exception but I am actually going to dinner with my mom tonight too. My stepdad and I have to take a…
#just wanted to add this note because this was such a dismal post. A few hours after I wrote this post I realize something very important, with secondary progressive MS you are not functional one day to Stuck on the floor another. I don’t have relapses anymore. I now realize I was sick with this abscess infection and it played havoc with my MS. So yes, this is a possible future for me with MS, but it won’t happen overnight….
According to my dermatologist yesterday she strongly feels that these blisters and now abscess are NOT because of an allergic reaction to Rituxan. Blisters and Rituxan More skin issues after Rituxan. She believes I picked up something and taking the Rituxan just helped the infection spread faster. Rituxan did it’s job by wiping out my B cells lower my immune system, or compromising my immune system, at the perfect time. According to the dermatologist the blisters under my breast and…
Last night was a very bad night. All my family and friends who haven’t heard the story I’m sorry you’ll be hearing it through my blog. I am fine. If I wasn’t I wouldn’t be writing this today. I played mahjong yesterday for the afternoon and got home around 3. I was completely exhausted more than normal. I started feeling achy as well. I think I was running a low grade fever because of this abscess on my stomach. More…
Something happened after my Rituxan infusion and whatever it is, it is still happening. https://multipleexperiences.org/2019/09/18/allergic-reaction-to-rituxan/. I’ve continued to get these blisters under my breast since my infusion. https://multipleexperiences.org/2019/09/17/blisters-on-breast/ Each one has left a scar so you can count how many there have been on each side. I’ve changed my bras, changed laundry detergent, even try to go bra less white home, they still come. The good news is I am seeing a dermatologist on Thursday as well as my MS…
Let me tell you, I’ve been dealing with bowel issues for a very long time having multiple sclerosis. https://multipleexperiences.org/2019/04/13/when-the-back-door-garbage-chute-isnt-working/. https://multipleexperiences.org/2019/06/07/backdoor-chute-muscles-missing-signals/. I’ve tried many different things that have worked for a short while only to stop working again. https://multipleexperiences.org/2019/04/19/backdoor-chute-suggestion-worked/. I finally went to see a gastroenterologist for help. https://multipleexperiences.org/2019/07/15/gastroenterologist-visit/ We started me on Linzess and tweaked things because it wasn’t really working out. https://multipleexperiences.org/2019/08/14/gastroenterologist-visit-again/. After trying a few things I landed back on Linzess and Amitiza. Eventually I was either not…
I realize something last night, for all my complaining about fatigue, I’ve been staying up most nights till 10 o’clock. If you look back to before I saw my doctor, I was in bed by eight and asleep by 8:30. https://multipleexperiences.org/2019/09/03/trip-to-the-neurologist/ This is before he gave me the Adderall. Yes, my body isn’t recovering from my exercise. Yes, I’m still exhausted and finding it hard to move about as easily as I was. However, I’m not at that stage of…
I wanted to share information received through my blog post on fatigue. This is why I write so we can share other ideas and thoughts from other patients and their doctors. This is from Sherry and I can’t say how much I appreciate the information. I’ve been struggling from fatigue for a while now and I am really at a loss. I have not tried this yet but I plan on bringing all this information to my doctor when I…
