If you or anyone you know may have or has been already diagnosed with Small Fiber Neuropathy(SFN), we are waiting to hear from you! #neuropathy#smallfiberneuropathy #
https://t.co/j3e4RngKLO
#SFN can be caused by about six different conditions - but in about 50% of cases, the cause remains unknown (idiopathic). Not having answers is frustrating, but it doesn't make your symptoms any less real or valid.
Find support: https://t.co/f1RKqHasum
#NeuropathySupport#SFN
Pacing is key with #SFN. That's breaking tasks into smaller chunks and resting between activities. It's not giving up, or being a failure, or your body working against you.... it's working to understand the body you live in at its most authentic level. Join the discussion below!
Temperature sensitivity is one of the most frustrating SFN symptoms. Your feet may burn but feel cold to the touch. This misfiring of nerves is one key to small fiber damage. Join our community for support!
https://t.co/f1RKqHb0jU
#chronicpain#chronicillness#SFN#support
You are not invisible. 💙 Living with SFN is isolating. The pain is real, but no one else can see it. You've been dismissed. Misunderstood. But there's a community here that gets it. We see you. Join us 🧡
https://t.co/f1RKqHb0jU
#SFN#SmallFiberNeuropathy#ChronicPain
Managing #SFN is a marathon, not a sprint. Be patient with yourself as you and your medical team find what works. Small improvements matter. Your efforts to advocate for your health are valid and important. 💙And don't forget, there is community out there through us. See our pinned posts to join our discord.
#SmallFiberNeuropathy, #Neuropathy, #ChronicPain, #InvisibleIllness, #ChronicIllness, #RareDisease, #PatientAdvocacy, #PeripheralNeuropathy
You know what else is NOT #FND? The Havana syndrome. Many neurologists argued that Havana syndrome was FND, aka hysteria, aka there was no real underlying pathology there. They were all wrong. Havana syndrome is not FND, and neither are #LongCOVID, #Dysautonomia or #MECFS.‼️
@quarecuttie Small Nerve Fiber Neuropathy
“Symptoms of sensory small fiber neuropathy include numbness, hypersensitivity, and spontaneous painful or annoying sensations called paresthesias.”
https://t.co/PtXmoH15u6
@Yash25571056 Patients diagnosed with a new-onset small fiber neuropathy (SFN) and post-acute/long COVID suffered from symptoms of neuropathy such as numbness, paresthesia, and allodynia.
https://t.co/kPQg1hpoN7
Gathered thousands of feedback inputs via social media and in-game feedback form, made plans to address most of them, lots of QoL/fixes/quick wins in the pipeline already! Staying busy.
I've also asked the art team for lots of new avatar options. Expanding the art team ASAP!
@elonmusk I'm sorry he betrayed you. I think we need more Love, Communication and Compromise. How about you?
I'd like to see the Elon Musk back that we were excited to see on Big Bang Theory, the Dreamer that wants his Son to see Mars. We want to see it too... 🫂💜
2/🧵
In no particular order, here is
1⃣ Dr. Peter Novak and his group showed in an open-label study that long-term high-dose IVIG is more effective for autoimmune autonomic and sensory small fiber neuropathy than the usual care.
https://t.co/Bt0ikDq5ar
See also: doctors (including neurologists!) desperately need to be retrained on how to spot, evaluate, and treat post-viral inflammatory Small Fiber and Autonomic Neuropathy.
Inflammatory/Autoimmune SFN is also what’s driving a massive portion of the POTS and #Dysautonomia happening in a#LongCovid, as it has been known to do with other viruses for decades.
It’s treatable with immunotherapy like IVIG, plasma exchange, and the new #FcRN inhibitor class of meds including #Vyvgart, and early treatment can prevent more severe illness and permanent nerve damage.
#Care4Complex
@SandyofCthulhu I'm so sorry you had to lose your brother this way. We definitely need change. The auto assumption that people are addicts is inhibiting the proper diagnosis and treatment of conditions like these.
@Piokou Just saw this on YouTube. Maple Story Style without Microtransactions sounds wonderful! Please consider adding Online Co-op for at least 1 other player. 🙂