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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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Manpreet Singh
@gorichodni.bsky.social
about 11 hours ago
What do you think would be the best MABs to use if not Teclistamab and Daratumumab? PLEX and IVIG are difficult to access monthly on a long term basis for many people including me. It almost seems we haven’t moved from these basic treatments for decades now with nothing new. Anything?
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Pina
@pinam.bsky.social
1 day ago
Die Entscheidung, IVIG schnell laufen zu lassen, habe ich getroffen, nachdem es mir nach jeder längeren Sitzung schlechter ging. Also, nur ein Versuch, der glücklicherweise gelang und bis heute funktioniert. Aaaah, verstehe, heute ist deine gefundene Vene wenig kooperativ 😉 Das ist nervig!
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Claus Ernst
@clausernst.bsky.social
1 day ago
Interessant! Ich vertrage IVIG ja tendenziell sehr gut. Vielleicht liegt es ja auch an der (ansonsten) hohen Tropfgeschwindigkeit? (Bei mir kommt noch sehr hoch dosiertes Methylpredni hinzu, dass kaschiert eh die Symptome gut) Nur heute staut es sich. Waren auch drei Punktuonsversuche nötig.
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Inflammatory Neuropathies UK
@inflamneurouk.bsky.social
2 days ago
Is tremor something that you have? #CIDP www.neurologylive.com/vie….
Large Cohort Study Suggests that Tremor May be Common in CIDP, Often Underrecognized | NeurologyLive - Clinical Neurology News and Neurology Expert Insights

www.neurologylive.com

Large Cohort Study Suggests that Tremor May be Common in CIDP, Often Underrecognized | NeurologyLive - Clinical Neurology News and Neurology Expert Insights

A new study reported that tremor and myoclonus affected nearly 7 in 10 patients with chronic inflammatory demyelinating polyneuropathy, with immunotherapy and beta-blockers showing potential benefit f...
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qutens 💕✨ hiatus 💉🩺
@qutens.bsky.social
2 days ago
I'm getting ready to head to the ER on orders by my Dr bc my IVIG treatments earlier this month ended up causing a bad flare up + complications. I'm hoping I can feel at least well enough to keep working on adopts so I'm not empty handed 😭
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European Journal of Neurology
@europeanjournalofneurology.ean.org
2 days ago
⚡ Evaluating diagnostic rigor in CIDP: In 339 patients and 339 controls, the revised 2021 EAN/PNS criteria demonstrated higher specificity (86% vs 78%) for definite/probable CIDP compared to the 2010 EFNS/PNS guidelines. 📚 onlinelibrary.wiley.com/d…. @ean.org #WileyNeuro
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muddy cat 🐈‍⬛ 🐾🐾🐾🐾
@muddycat.bsky.social
3 days ago
Freaking. Everything was fine till I had to go pee. I could feel my heart pumping hard then the pain hit. 9/10. I don’t know if I’ll try to have another infusion. It’s called IVIG.
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retailescapeartist
@retailescapeartist.bsky.social
4 days ago
a little bit of good news. I got my IVIG plasma infusions back and they'll be starting next week.
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The Sumaira Foundation (TSF)
@thesumairafdn.bsky.social
4 days ago
🌴 Conozcan a nuestros valientes panelistas, pacientes y cuidadores! 🌺 Únanse a pacientes, cuidadores y familias de las comunidades #CIDP, #MG, #MOGAD y #NMOSD para un día de educación, conexión y apoyo. ¡26 de septiembre! tinyurl.com/TSFMiami2026ES
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The Sumaira Foundation (TSF)
@thesumairafdn.bsky.social
4 days ago
🌴 Meet our courageous patient & caregiver panelists at Miami Patient Day! 🌺 Join patients, caregivers & families from the #CIDP, #MG, #MOGAD & #NMOSD communities for a day of education, connection & support. Sept. 26! Register: tinyurl.com/TSFMiami2026
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K. Vale Nagle
@kvalenagle.bsky.social
4 days ago
IVIG is every three weeks (over two days that week), so next week =) And, if I don't get vetoed, they plan to move me back up to my November dose. Things are... very busy and stressful for a few weeks more at least.
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Rich Collins
@richcollins.bsky.social
4 days ago
Over in Brussels for a few days to discuss #CIDP with folk from across Europe as part of #Dare2Move
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@brandon-beaber.bsky.social
4 days ago
From the famous 2001 IVIG randomized trial in stiff person syndrome showing it is effective. The dose was 2g/kg monthly (divided in 2 daily doses). www.nejm.org/doi/full/10....
High-Dose Intravenous Immune Globulin for Stiff-Person Syndrome | NEJM

www.nejm.org

High-Dose Intravenous Immune Globulin for Stiff-Person Syndrome | NEJM

Stiff-person syndrome is a disabling central nervous system disorder with no satisfactory treatment that is characterized by muscle rigidity, episodic muscle spasms, high titers of antibodies again...
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MedPage Today
@medpagetoday.com
5 days ago
Patients with newly diagnosed idiopathic inflammatory myopathies such as dermatomyositis improved more when they received IVIG alongside prednisone than with the steroid alone in a placebo-controlled, randomized trial. www.medpagetoday.com/rheu…
Trial Confirms IVIG as Useful Therapy for Inflammatory Myopathy

www.medpagetoday.com

Trial Confirms IVIG as Useful Therapy for Inflammatory Myopathy

But thromboembolic risks could be significant
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arianek (she/her)
@arianek.bsky.social
6 days ago
If you’re still on FB maybe ask in one of the big IVIG groups if anyone has managed to get residence here while on it? I have no idea how the nuance of getting evaluated for immigration works around these things.
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Alicia 👻
@alig88.bsky.social
6 days ago
And I’m still waiting to be properly diagnosed but they found damage on a MRI from what they called a minor silent stroke and possible multiple sclerosis (I do have an aunt who has MS). So I’m basically a mess and still trying to get my life back on track 🤣
A summary of a visit with a neurologist explaining that I had a MRI where they found a few hypersensitivities that are suggestive of a demyelinating disease such as multiple sclerosis
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emily fraser 🌿🐌✨
@emilyesfraser.bsky.social
7 days ago
Disability insurers (the largest of which are governments) health insurers, & reinsurers all benefit from a status quo where people with ME & Long Covid can’t find doctors who will vouch for them, & where expensive treatments like ampligen, IVIG, & even at-home palliative care aren’t covered
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SirenofTheWillows🏳️‍⚧️
@sirenwillows.bsky.social
7 days ago
I've been home for 2 months and I've yet to have any preventative treatment for my disease. I hope my smooth sailing lasts for a while. American Healthcare freaking sucks. My insurance has rejected IVIG and Rituximab multiple times, slowly running out of options and energy to keep appealing.
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arianek (she/her)
@arianek.bsky.social
7 days ago
Do I remember right that you have CIDP? If so it’ll be no problem, that’s one of the major automatic approval conditions for IVIG. That is, if they would let you move here. They do discriminate against people who are disabled and will be an obvious high cost to the system.
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a fishwife
@lintoinette.bsky.social
7 days ago
Oh my goodness a lot has happened. Are you starting to do a little better? This is also good to know because I’ve had thoughts about maybe leaving the US for Canada and the biggest barrier in my mind was getting my IVIG set up 
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