Nairamtrab πŸ‹πŸ‡ͺπŸ‡ΊπŸ‡ΊπŸ‡¦πŸ³οΈβ€βš§οΈπŸ³οΈβ€πŸŒˆMar 14
#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! πŸ₯³ It is not normal yet, but so much better. I started very carefully jogging a little bit during my walks (5x1’1’). 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.
RhyothemisMar 13

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
Nairamtrab πŸ‹πŸ‡ͺπŸ‡ΊπŸ‡ΊπŸ‡¦πŸ³οΈβ€βš§οΈπŸ³οΈβ€πŸŒˆJan 30
#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
I dried my feet and I felt my toes a little bit!!! πŸ₯³
IVIG is working!
Nairamtrab πŸ‹πŸ‡ͺπŸ‡ΊπŸ‡ΊπŸ‡¦πŸ³οΈβ€βš§οΈπŸ³οΈβ€πŸŒˆJan 29
#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.
Nairamtrab πŸ‹πŸ‡ͺπŸ‡ΊπŸ‡ΊπŸ‡¦πŸ³οΈβ€βš§οΈπŸ³οΈβ€πŸŒˆJan 28
#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
Hello my dear peeps, I’m in hospital for a 4 day cycle of immunoglobulines. I’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.
Nairamtrab πŸ‹πŸ‡ͺπŸ‡ΊπŸ‡ΊπŸ‡¦πŸ³οΈβ€βš§οΈπŸ³οΈβ€πŸŒˆDec 28
#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
Happy πŸ˜ƒ! Beautiful day and I walked 8 km yesterday. Exercises are paying off! I wasn’t able to walk more than 4 km last month, so this is a real improvement! πŸ’ͺ
Nairamtrab πŸ‹πŸ‡ͺπŸ‡ΊπŸ‡ΊπŸ‡¦πŸ³οΈβ€βš§οΈπŸ³οΈβ€πŸŒˆDec 24
#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 I’m diagnosed last month with CIDP, running is no longer possible. My goal now is to improve my balance and walk β€œnormally”. Treatment is booked for last week of Jan and last week of Feb. 🀞Wishing you all a happy festive season and all the best for 2026! πŸŽ„
Shayla Maas || EirenneSep 26

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

NyamburaAug 28, 2025

Joy Khakasa Lwangu faces a choice no one should make: Monthly #StiffPersonSyndrome treatments costing 1.5 MILLION KES for life OR One chance at freedom with YOUR help https://chronicallyrare.wordpress.com #ivig #kenya #igkenya #igerskenya

https://maryanjuguna.wordpress.com/2025/08/28/7-days-2000-people-one-chance-to-change-joys-life-forever/?utm_source=mastodon&utm_medium=jetpack_social

Chronically Rare

Health, Wellness and Awareness

Chronically Rare
iBallestyJul 20, 2025

🧡 ME/CFS & Long COVID: What Actually Helps 🚨 3,900+ patient reports ranked treatments by real-world impact. Here’s what worked πŸ‘‡

βœ… Pacing (Top-rated) βœ… IV fluids/electrolytes βœ… IVIG & lymphatic drainage βœ… Low-dose Naltrexone, NK/LK βœ… Compression stockings, antihistamines βœ… ADHD meds (brain fog) βœ… Melatonin (sleep)

❌ Graded Exercise Therapy (GET) – most harmful

🎯 Tailored treatment by symptom cluster = πŸ”‘ #LongCOVID #MECFS #PatientExperience #LDN #IVIG #POTS

https://www.pnas.org/doi/10.1073/pnas.2426874122