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A MyMSTeam Member asked a question 💭
Bonita Springs, FL

I think I am on the mend. My right side is still weak, and I am scheduled to start steroid infusion but now I am starting to worry about that.... at the same time I am concerned about my massive white ghost on my brain MRI so I guess I don't have a choice. Any advice for the infusion? I am on the autoimmune protocol and plan to continue taking bio-k rice milk probiotics.... what else could help me sail throu this?

May 3, 2017
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A MyMSTeam Member

Being on the autoimmune protocol you are in a good position to start your steroid treatment. You want to avoid anything overly stimulating (like sugar and caffeine...). I found that I had to stop watching my fav detective shows because it was adding to my stress levels. Comedies and nature docs were the way to go. Do yoga stretches if you can or deep breathing and drink lots of water. Meditate. Nap. Lots of hugs.

Allow yourself "treats". Make yourself some AIP pudding or gelatin if that is what mom used to give you when you were feeling sick.

I had issues with being able to eat towards the end of my IV solumedrol treatment last year. Bone broth soup with ginger, cilantro and well cooked carrots helped as did nibbling on avocado. I wasn't nauseated per se but I just couldn't stomach eating more than a few bites of food at a time.

You will get through this.
>hugs<

May 3, 2017
A MyMSTeam Member

Looks like there is lots of great advice and experience already given so I think just thrust it and relax. My experience with steroids have not been bad . Don't sleep that well sometimes but back when I was working that was normal anyway so no big deal . Now I just play more moline poker all night. Guess I have had this crap too long as it just doesn't drag on me like as much as it did. When it rears its head I cuss it , deal with and hope it moves on quickly. Good news it hasn't affected my ability to play poker. Guess that is something . Nuts I Guess I am.

May 3, 2017
A MyMSTeam Member

Infusions are truly a life saver. I have done large doses intravenously for three days multiple times. Worst side effect is you'll be wired, but truly it is a nice change from being fatigued. Try to eat healthy foods, and bring mints with you for the infusions. They give you a Metallic taste in your mouth ;) Good luck!

May 3, 2017
A MyMSTeam Member

Thank you all! I'm on my 2nd day of infusion and so far so good... even feeling better! Woo hoo fingers crossed for full recovery 😘

May 6, 2017
A MyMSTeam Member

I wanted to mention that the current course of treatment is to not do the tapering off after the IV solumedrol.

My treatment last year was for 5 days and I had no problems once it stopped. I had taken oral prednisone for flare-ups before and had much more pronounced anxiety during and after the taper. The sound of a phone ringing produced similar stress to when I was in a car crash...

May 3, 2017

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