#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! 🥳 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.

#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
I dried my feet and I felt my toes a little bit!!! 🥳
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, 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.

#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
Happy 😃! 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! 💪

#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 “normally”. 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! 🎄

#runnersofmastodon #running #runninggrannies #alienrunners #paresthesia #neuropathy #CIDP #polyradiculopathy #raredisease
Hello my dear peeps, I have the verdict. I have a rare chronic auto-immune disease attacking my nerves: CIDP or chronic polyneuropathy. This dark cloud has a tiny silver lining: there is treatment possible. Fingers crossed now I will react positive on it.
Waiting for the hospital to call me when I can start the immunoglobulin treatment.

Tomorrow I will cycle to QMC for 8am to start the first of five days of intravenous immunoglobulin infusion, treatment for my Cidp. Six months after consultant recommended. Fingers crossed for improvements a few weeks later (and no headaches) 🤞
#cidp #ivig #qmc

Jeg bliver simpelthen rasende, når jeg hører om en sag som denne. Når personer i systemet, som man er afhængig af skal redde én, har en helt dagsorden. Arrogant afviser at støtte dem, der i sat i verden for. »Det er vanvittigt, uværdigt og utrygt som patient. Han sidder med mit liv i sine hænder og lyver over for mig om, hvad jeg har fået i et forsøg. Og så endda for at få mig over i en behandling, der skader mig frem for at hjælpe mig«. #Rigshospitalet #forsøg #CIDP https://www.bt.dk/samfund/bt-afsloerer-professor-talte-usandt-om-menneskeforsoeg-det-er-vanvittigt-uvaerdigt