Dear LWE-friends,
You've been on my mind even though I wasn't able to write here for a while.
Much happened since the last time I was here:
I researched my own diseases. Struggled to get to the right doctor/tests. I have ME, and became active in patiënt-advocacy. I 've been caring for my father who became seriously ill and went to hospital. He is at home now, although fragile.
Today, finally, after 11,5 years… DIAGNOSIS DAY!
- no Polyneuropathy
- no Small Fiber Neuropathy
- yes Erythromelalgia best possible explanation for hand problems
- underlying Lupus unlikely
- Raynauds Phenomena possible
I will share more details about my journey to this 'D-Day' later. Big hug,
Willemijn