I wrote this blog a long time ago. I am reposting it because I just had my annual MRI. My doctor was happy to report that my MRI had no changes. No changes but my right side disability has not only caught up to my left side. It usually is worse. My right side that has overcompensated for the last 27 years with the weakness to the left side. The rest side where enabled me some form of mobility. My…
I have so much to catch you up on, I’m not really sure where to start. I seem to have the UTI’s under control. I’ve made it two months without needing antibiotics. I am talking a prophylactic antibiotic nightly as a precaution. Hopefully I am through the cycle I was living inside. I was also given a round of IVIG therapy to boost my immune system. That is an IV of immunoglobulin. By boosting my immune system we are once…
I’m faced with a major decision coming up soon. Do I continue taking Rituxan? Not only Rituxan but any disease modifying therapies. I’ve been plagued with infections. I do believe that all of these infections have not only been difficult for me mentally but have played a significant part in the worsening of my symptoms. It’s the age old question, is the MS medication doing anything for me? Are the side effects, lowered immunity, and damage from the intense medication…
I had a conversation this morning with my neurologist. This was my specialist in NYC however I did have the conversation with my other neurologist last month. It is on a topic we have been questioning with every UTI I’ve dealt with since April. Is it worth continuing suppressing my immune system anymore? I have certainly not been stable on Rituxan. Part was due to the pneumonia, can’t blame Rituxan on that decline. However, over the last year, I have…
I keep meaning to write. I have every intention. Then at the end of the day, I realize I didn’t write again. Normally I actually write my blog the day before but since WordPress had an update, I schedule the blog but it never posts. I finally got annoyed and stopped writing the day before and then stopped writing on the day. So here I am. I would love to say so much has happened since I last wrote, but…
Hello to all!!! I am still fighting the good fight here. I just got back my second urine culture which showed positive still for an infection. Yet at the bottom in this one little line is >=3 organisms probable collection contamination. Well how is that possible??? I know we got a clean sample from the source. The only thing is that my aide didn’t fully tighten the lid to the sample cup. The urine leaked out a little into the…
Good morning everyone. So, looks like my latest stretch of the last few weeks of suffering might be due to a UTI. Even though we are still waiting on the lab results, my doctor prescribed me antibiotics yesterday. However, when the culture does come back, we might have to change antibiotics based on the strain. I should’ve known. I can’t feel that area anymore yet my aide has said my urine has NOT been clear for a while now. I’ve…
Did you ever watch the cartoon The Jetson’s? You know meet George Jetson 🎶,his boy Elroy, his daughter Judy, Jane his wife 🎶. They were the futuristic family that drove the cars that flew in the sky. It was their phone that I was thinking about lately. They would get a call and it was always on this monitor. You would see the person that they were talking to. I remember thinking this was such a cool thing. Granted I…
I have to say this cold has kicked the shit out of me. I know taking Rituxan lowers my immune system but I honestly very rarely get sick. Even my issues in 2022 I was on Kesimpta, not Rituxan. The last cold I had was back in 2019 when I went on my last vacation. I went to Mexico with my family. I had the worst cold. I was miserable for the first 4 days of the week’s vacation. I…
It’s my birthday tomorrow. 51!!! I’m middle age. I think my body has been middle age since I was 43. That was when multiple sclerosis hit me with the last relapse that started my path of true disability. It’s been 8 years since that last relapse. It was when I was switching from Tysabri to Rituxan. I made the mistake of stopping Tysabri because I actually had the thought of switching to an experimental drug. I needed to be off…
