Kirstie Sivapalan
@kirsties.bsky.social did:plc:dvnjcf2hkqqbs2ccafqyq53q
UK #pwME #pwLC #MECFS #LongCovid #PEM (post-exertional malaise) as well as #Politics and other related chat. I use lists to manage my chats here. Feel free to use them or ask to be added https://writingandme.com/ https://open.substack.com/pub/kirstiesi
Bluesky’a katılma tarihi:
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Özet
Kirstie Sivapalan (@kirsties.bsky.social), 19 Eylül 2023 tarihinde katılan bir Bluesky kullanıcısı. 2.839 takipçisi var, 1.297 hesabı takip ediyor ve 1.691 post paylaştı.
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Bluesky ağındaki herkese açık beğeniler.
I went to the appointment to rule out or in Parkinson's. Once that had been done, best they say nothing else. I'd prefer a 'don't know' to patent nonsense. I still have the tremor; it's just blended in to everything else.
Postu gösterGiven we spend 22+ hours a day in or in bed, the notion that we don't have a single specialist doctor, never mind a full-scale treatment pathway, available to us it just incredible. 🫂💜🫂
Postu göster...only so many things you can fight at once. Previous experience has taught me it is *impossible* to correct inaccuracies in consultant letters.
Postu gösterI did. The letter spoke of 'functional entrainment' (re a tremor after COVID vaxes) but stopped short of the label. And so much factual inaccuracy despite providing him with a written résumé of diagnoses, symptoms and reason for referral. I did get an MRI though so I decided just to leave it be...
Postu gösterSigh... The last neuro I saw tried to tag me with FND. They steal a living when they see us.
Postu göster
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