Top Posts Tagged with #briumvi

Survival or something like that.

I guess that's the name of the game. I really don't know whether or not to try Briumvi. Something in my gut is so hesitant and mistrustful of the shiny infomercercials. Patient reviews and clinical trial tout high percentage of respiratory and urinary infections.

I narrowly survived septic staph twice and they told me next time, it would likely go to my brain and be incurable. Since it naturally lives on your skin and I get scraped and dinged like it's my job, I'm concerned about that too.

I'm not sure what the answer is, but somedays the weight of it all is crushing. I miss my old PCP who actually utilized critical thinking skills and listened to my concerns. Le sigh. On we go.

#invisible illness #multiple sclerosis #ms #briumvi #chronic illness

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My new MS med gave me a headache that lasted 2 days, and dizziness and a pounding, slightly irregular heartbeat that lasted around 4. I like the fact that I’m only gonna need infusions once every 6 months from now on, but that first 6 hour infusion wore me out. Between testing, premeds, the infusion, and the observation period, I was at the doctor’s office for 10 straight hours that day. I’d rather have another spinal tap than ever have to do that again.

#mine #multiple sclerosis #briumvi #thankfully all future infusions will be 1 hour #if they had another appointment like that I think I might drop out of this study #it would be different if they paid me for it #but it’s specifically written in the contract that they won’t pay me for any visits where I see my neurologist