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My Tarlov cysts

Symptoms started from 2005 - 5 sacral cyst
1 large on S3 left-Middle. 4 smaller cyst S1 and S2 bilatteral. Cysts were not mentioned by radiogists or neurologist. Found out myself in 2017, 2018 a official diagnosis in Belgium, after fysicians in the Netherlands told me the cysts never cause pain/symptoms.
Diagnoses was confirmed by meedle EMG and NCS. Severe nervedamage.

Bedbounded since 2018
2019, cyst growth and also dilations all over cervical spine - Intracranial Hypertension - hEDS

Now I am helping other patients in the Netherlands as secretary of SOSNL on their way for recognicion, and create awareness for fycicians in the Netherlands.

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