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Kesimpta delivery scheduled

Kesimpta delivery scheduled

I got a call yesterday from the pharmacy about the delivery of my new medication, Kesimpta. I am being mailed 3 doses for my first month. I take a shot weeks 1,2 and 4. From there it will be once a month. The shot is recommended to be in my thigh, stomach or upper arm. All the memories of the years of Betaseron come flooding back. Betaseron was my main MS drug until Gilenya, a pill, came out. 12 years…

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Kesimpta concerns

Kesimpta concerns

I wrote a whole blog on Wednesday but my site had issues and it never posted. To make it worse it didn’t even save anywhere. I spent 45 minutes writing and my words disappeared into a cyber black whole. It was very frustrating and I certainly didn’t want to rewrite another post. To be honest I don’t usually have a plan when I start writing. I might have an idea but normally I let the words take the direction. I…

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Ocrevus vs Rituxan

Ocrevus vs Rituxan

My infusion scheduled for March 17. I’ve been on many of the disease modifying MS drugs over my 23 year span with the disease. Betaseron still holds the record of 12 years but that also has to do with the drugs that were available when I first got diagnosed. I have been on either Rituxan or Ocrevus since 2016. I group these two drugs together for very specific reasons, they are fundamentally the same. The biggest difference is Rituxan is…

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Valentine’s Day marks 23 years with multiple sclerosis

Valentine’s Day marks 23 years with multiple sclerosis

At the age of 49 I’ve lived almost half my life with the disease. It was the weekend of Valentine’s Day when I was moving into my new home that my left foot started to go numb. Within 4 days it was all the way up the entire side of my body. Within 6 days I was at a neurologist who was asking my mom and I if anyone in my family had MS. Having actually had optic neuritis about…

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Possible delayed Covid vaccine reaction or just Multiple Sclerosis

Possible delayed Covid vaccine reaction or just Multiple Sclerosis

I want to start this blog by saying that normally I’m a hot box. I’m wearing T-shirt’s in winter, my sweatshirt is my idea of a jacket and I normally like the air a little chilly. This hasn’t been the case this year. I’ve been cold, especially at night. I’ve been waking up having slight chills making me crank my heat in my bedroom to ridiculous temperatures. Last year I could count how many times I even turned on my…

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Cold outside and I’m sweating….

Cold outside and I’m sweating….

It’s 48 degrees out and I’m in a complete sweat. I haven’t even worked out yet because I have therapy this morning. I am sitting around waiting for my therapist. I have opened my windows but the breeze wasn’t enough, I just turned on my fan. I’m dressed in a thin pant and a t-shirt. WTF!!!! I just got a call my therapist is running late, thank goodness. Hopefully I can get myself cooled down before he gets here otherwise…

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Unpredictable multiple sclerosis

Unpredictable multiple sclerosis

My neurology visit was uneventful yesterday for the most part. He did a quick exam and during the exam he said I always forget how myelopathic your MS has always been. He always says that to me. First I had a remember what myelopathic meant and then I remembered what he meant. Myelopathic is referring to the spinal cord. What my doctor means is that my MS is in my spinal cord not in my brain. All my symptoms fall…

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Neurologist was as expected

Neurologist was as expected

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…

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So many needles

So many needles

I have to do bloodwork this morning. You think I’d be a lot less needle phobic with the amount of shots I’ve received over the years but I’m really not. I’ve from the earliest medicine for MS. I’ve been on Avonex, Betaseron, Rebif and even Copaxone. These are all medicines that required weekly or even daily shots that I had to learn to administer myself. For the first 12 years of my journey I had to do these. When Gilenya…

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Increased antidepressant prescription

Increased antidepressant prescription

Snap out of it!!! I was telling myself that for a week. I spent a week in pjs because I didn’t have the energy to get up and get dressed. I’ve been lethargic and tired and just morose. I was off of the steroids and knew it could be a side effect but it was bad. I saw the specialist that Tuesday and when we got to the list of my medication and Prozac she asked for the very first…

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