#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.

#runnersofmastodon #running #runninggrannies #alienrunners #paresthesia #neuropathy
Hello my dear peeps, since last month I lost the feeling in my little and ring finger and have difficulty writing. Good thing we’re using computers in this age. I walk with nordic walking sticks to avoid falling. Working with the physiotherapist on balance and coordination. Tomorrow I have an appointment with the neurologist to hear the diagnosis. I’m a bit nervous. Cross your fingers for me they can treat me.

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Hello my dear peeps, another medical update from me. I just hope you don’t get tired of me. I’ve been hospitalised for 2 nights for further diagnosis, they’ve taken loads of blood, biopsies from salivary glands, lumbar puncture and a CT scan of the upper part of my body. They leave no stone unturned. I’m waiting for most of the results.

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Medical update: I finally saw a neurologist last Monday. The EMG was abnormal as I expected. He thinks it might be caused by a virus and my immune system is attacking my nerves. Next step is a lumbar puncture for further diagnosis and treatment. No running for me in the near future if at all 😢

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Medical update: Apart from the numbness in my feet, reflexes are completely absent in my legs. No wonder I cannot run and have difficulties walking. Strength is considered to be ok. Blood tests show nothing particular. A last test to be done to exclude Lyme. In the meantime I’ve been given vit. B supplements and magnesium, although all values are within normal limits. 🤔

#runnersofmastodon #running #runninggrannies #alienrunners #paresthesia
Terrible run today, numb feet, bad coordination, no strength.
Feeling depressed, this is so frustrating 😫