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demyelinating

demyelinating

by david @ middleway david @ middleway

Chronic inflammatory demyelinating poly-radiculo-neuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms #demyelinating // Made at BlueskyFeeds.com

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  • 📅 Updated 10 months ago
  • ⚙️ Provider blueskyfeeds.com

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My Friend Kaylen
@myfriendkaylen.bsky.social
about 5 hours ago
I have new neurocardiac symptoms. It's affecting my heart and blood pressure. I get to add a few new doctors to my team and visit Cleveland Clinic! I may be a candidate for IVIG (immunoglobulin therapy). 🤞🏻 After all these years, it's amazing to see treatment developments.
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PISS_SHITTER
@amiyatzin.bsky.social
about 6 hours ago
is a demyelinating auto-immune disorder a "temporary problem" because I was led to believe that it was an intransigent painful life-long struggle that ends in excruciating death
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Koda and Eris-daily diary
@kodaeris.bsky.social
about 10 hours ago
so IVIG is usually reserved for when you’ve exhausted the other treatments.
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Koda and Eris-daily diary
@kodaeris.bsky.social
about 10 hours ago
Rose, it’s my insurance, but it’s also the fact that they can’t figure out why I have MG. I don’t make the antibodies for treatment and there’s a progression to treatments, but I don’t qualify for those treatments because I don’t make the anti antibodies so I want this other treatment called IVIG
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Jen 💙🌈 📚👩‍🏫🐕
@crazy-doggie-lady.bsky.social
1 day ago
Mine went up 114% and I have to have it for IVIG treatment
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Julia Doubleday
@juliadoubleday.bsky.social
1 day ago
The money I make from Substack keeps me financially independent, allows me to access medical care, and with further support I hope I might be able to access some of these more off label treatments like IVIG and anti virals. Idk. Idk what else to do atp. I’m scared to be so sick
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K. Vale Nagle
@kvalenagle.bsky.social
2 days ago
Well, I kinda assumed everyone had Friday off for the holiday, but I got bad medical news from the IVIG clinic a few hours ago, and I think I'm gonna have to do a GoFundMe to get through the year alive and not homeless, so please bear with me while I figure this out.
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@vasculitides
@vasculitides.bsky.social
2 days ago
Clinical utility of CBC-Derived inflammatory markers for predicting IVIG resistance: findings from a Korean infant Kawasaki disease cohort
Clinical utility of CBC-Derived inflammatory markers for predicting IVIG resistance: findings from a Korean infant Kawasaki disease cohort - PubMed

pubmed.ncbi.nlm.nih.gov

Clinical utility of CBC-Derived inflammatory markers for predicting IVIG resistance: findings from a Korean infant Kawasaki disease cohort - PubMed

MLR demonstrated moderate discriminative ability for predicting IVIG resistance in infant KD, suggesting its potential as a simple, cost-effective tool for early risk stratification in this vulnerable population.
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Rare Disease Advisor
@rarediseaseadvisor.bsky.social
2 days ago
A complicated relationship with "care"... 💙 Jaimie Sheil, CIDP Contributor, shares how living with a rare disease changed her understanding of the word. ✨ Read Jaimie’s full story: bit.ly/4pwCpGb #RareDisease #CIDP #RareVoices
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Progress Educational Trust (PET)
@pet-bionews.bsky.social
3 days ago
A patient who brought a claim against an #IVF clinic has had her case dismissed. She suffered a stroke that left her with vision loss after using IVIG treatment (an IVF addon). Ryan Au writes in BioNews: www.progress.org.uk/patie…. #FertilityTreatment #Fertility #Infertility
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European Journal of Neurology
@europeanjournalofneurology.ean.org
4 days ago
⚡️ Steiner et al. report that CIDP burden extends beyond sensorimotor deficits. Motor and cognitive fatigue are clinically relevant and often under-recognized. 📚 Read now: onlinelibrary.wiley.com/d…. #Neurology #CIDP @ean.org #WileyNeuro
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Inflammatory Neuropathies UK
@inflamneurouk.bsky.social
4 days ago
Are we ready to chat? Our online CIDP Get Together is at 2pm today on Zoom. Join us: www.inflammatoryneuropath… #CIDP
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Moody Loner
@moodyloner.bsky.social
4 days ago
Got my system back from the shop. The staff were curious as to why a Linux person was bringing their computer in rather than repairing it themselves, so I got to tell them about my chronic inflammatory demyelinating neuritis and how things that were easy and enjoyable are now impossible.
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