Reply To: MS nurse…….. Help needed

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itsmewithms
1 week ago

This is a global forum so I can only compare to the treatment I have received in the US. Whenever I call the MS nurse that my Neuro has and report a symptom that has lasted over 24 hours he relays that back to my Dr. He then contacts me back for next steps.

For example- I left the message yesterday that the vision in my left eye is blurry. It seems like there are blind spots but I will need a visual field test (I have had several through the years so am getting to know when I need one) to determine how bad it is. My right eye is the dominant eye so I can still see fine to drive, read, etc. I think if something fast approaches me from the left I won’t be able to manage it well without turning my head.

I wasn’t too worried about this but called and reported it as I am told to. Since it involves vision my Dr takes it very seriously and wants me to have an MRI of the brain ASAP with extra focus on the optic nerve. It is now scheduled for Monday morning.

I was surprised he wanted me in so fast as I had gait and balance issues that developed in June and the MRI had no active lesions so he would not prescribe the Prednisone/steroid course. He (and a second opinion at our leading medical facility in the US) feels I am moving into SPMS and moved me from Rebif to Ocrevus. I had the second part of the first dose infused yesterday.

It is important to receive the steriod treatment to shut down the inflammation to feel better sooner. There may still be debate if it limits the amount of damage the lesion will cause versus just shut down the activity. At that point I really don’t care…I just want to be able to see again- now! or walk again – now! and that is what the prednisone did for me…I can see in others posts that it didn’t work well for them so apparently it isn’t a cure all-

Others have reported that they received steroids and they didn’t help so we asked how much they were receiving and it was a small fraction of what I received and given in tablet form. It could be that the dose they received was so low it was only a nuisance and not a cure. I had an IV placed by a nurse and then 5 balls of prednisone that would be hooked to the Iv (one per day) that I would handle at home. I just had to sit quietly for an hour, flush the line and hook it up. After the 5 days of the IV prednisone I would pull out the IV (it just slips out) and place a bandaid. Then there as a tail off pack of pills for the next 5 days.

Looks like this:
https://infuserveamerica.com/104/elastomeric-pumps/

From the article on steroid treatment some of the doses are listed for comparison:
The most common MS flare treatment is 1 gram of intravenous (IV) methylprednisolone (Solu-Medrol) daily for 3 to 5 days. It’s a liquid steroid that’s slowly dripped into your vein through a thin tube. Your IV treatment is also called an infusion.

I would only be given this if there was an active flare seen on an MRI…so that was always the first step to kick it off. I remember having at least 3 attacks that were treated this way over the years…maybe 4. They worked very well for me. I’d really push on any contact lines you have with her Dr for resolution. I’m not sure what DMT she is on but they usually have nurse lines available 24×7 to check in with and they may also help apply pressure. I think they are very motivated to keep her on their drug so want it to work and for her to be well. Use every avenue you got…It sounds like you are a good advocate 😉 push on