#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #raredisease #IVIG
Hello my dear peeps, an update on my health. Although clinically there is a lot of improvement the ENMG didnโ€™t show any progress. So, I have mixed feelings. No treatment coming up, unless I deteriorate. Anyway, Iโ€™m slowly building up the ๐Ÿƒ๐Ÿผโ€โ™€๏ธ. Iโ€™m at 4x2โ€™ with 2โ€™ walking in between. Last year I planned to run the Rotterdam marathon to ๐Ÿฅณ my 60th birthday. Iโ€™m 60 now, Garmin thinks Iโ€™m 20 ๐Ÿคญ.

New #LongCovid case report:

โ€œThis patient provides exploratory evidence that high-dose intravenous immunoglobulin was associated with sustained clinical recovery from long COVID over 1 year of follow-up, accompanied by immunological changesโ€ฆโ€

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(26)00063-0/abstract

#NeuroPASC #IVIG @longcovid #CovidBrain

#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
Hello my dear peeps, I had my 2nd cycle of immunoglobulines the last week of Feb. and I can feel my feet! ๐Ÿฅณ It is not normal yet, but so much better. I started very carefully jogging a little bit during my walks (5x1โ€™1โ€™). Physiotherapist is a bit worried, warned to take my phone and turn on the location service. End of March another ENMG to see how things are.

Manitoba weighs ban on for-profit plasma donations after 2 deaths | CBC News: The National
12 March 2026
https://youtu.be/3-E4KmaQ3Mo

#PlasmaDonation #Canada #IVIG

Manitoba weighs ban on for-profit plasma donations after 2 deaths

YouTube
#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
I dried my feet and I felt my toes a little bit!!! ๐Ÿฅณ
IVIG is working!
#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
I JUST ACED THE 500m WALK TEST!I THINK I AM THE BEST! NOBODY CAN DO THIS TEST AS I DID! DOCTORS SAID I DID REALLY WELL.
THANK YOU FOR YOUR ATTENTION TO THIS MATTER.
#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
Hello my dear peeps, Iโ€™m in hospital for a 4 day cycle of immunoglobulines. Iโ€™ve had 2 days and all went well till last night. Terrible headache and I vomited this morning. Waiting for labresults to start the infusion today at a slower rate.
#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
Happy ๐Ÿ˜ƒ! Beautiful day and I walked 8 km yesterday. Exercises are paying off! I wasnโ€™t able to walk more than 4 km last month, so this is a real improvement! ๐Ÿ’ช
#runnersofmastodon #running #runninggrannies #alienrunners #paresthesia #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
Hello my dear peeps, the idea was to run the Rotterdam marathon spring 2026 for my 60th birthday. But as Iโ€™m diagnosed last month with CIDP, running is no longer possible. My goal now is to improve my balance and walk โ€œnormallyโ€. Treatment is booked for last week of Jan and last week of Feb. ๐ŸคžWishing you all a happy festive season and all the best for 2026! ๐ŸŽ„

Reaching out to the social media hivemind for a hope that someone has an answer for me.

Do any of y'all who get (or give!) #IVIG infusions have experience with NON-Demerol methods of controlling rigors reactions? Particularly interested in hearing your experiences using tramadol and/or clonidine. /1