~Somehow~

♿🦓 This account: Searcing for (mostly) health related info of value for our family & others. Checking in here when possible
Also
@somehowso. ɓ ṣ

[~Somehow~ @4_somehow]

I cannot warn enough about this. Ppl's lives have become a nightmare, both for patients and families, incl ours, due to too little knowledge in the healthcare system - and thus incorrect treatment.
Autoimmune conditions after viruses can affect the brain!
https://t.co/TUePre9VKR

[~Somehow~ @4_somehow]

@midtimellom_mye Kjenner også til flere. De forulykkede blir skadet for livet av andre(!) men får ikke adekvat behandling. Alt blir i stedet hengt på den knaggen en tidligere lege måtte ha funnet for godt å skrive, f ex at omsorgsoppgaver 'nok må ha vært slitsomt', - forsikringsselskap klapper.!

[~Somehow~ @4_somehow]

@alexandrite113 @AliBrow99043217 So sorry! This reminds me of my own similar story many years ago. I had the worst time of my life because of drinking a mix of milk, proteins, egg & fermented. Later in life I also learned I didn’t tolerate milk proteins, not only lactose. My kids as well. They get very ill..!

[Brain Inflammation Collaborative @BrainInflCollab]

Brain injury and inflammation are linked to mental illness.

This is one of the few stories that accurately portrays the daily mental health struggles that many with encephalitis face...🧵

https://t.co/UoD7pMclYR

[Julie Rehmeyer @julierehmeyer]

More than 2400 B l u e S k y codes have gone out to people in the disability and chronic illness communities! Request or donate codes here. Let's keep supporting one another no matter what happens here on Twitter. https://t.co/kIAR5xVm4B

[Dysautonomia Intl. @Dysautonomia]

#Dysautonomia is a group of disorders associated with autonomic nervous system malfunction. The autonomic nervous system plays an important role in regulating GI motility. People with various forms of dysautonomia can have significant GI symptoms. #DysautonomiaAwarenessMonth

[~Somehow~ @4_somehow]

– Oppfølginga av pårørande er svært mangelfull. Det kan eg med handa på hjartet seia, både av erfaringar og eigne studium, seier Svendsbø, som også har teke doktorgrad på feltet.

https://t.co/AqzkVz1mkE

https://t.co/fHmkBYWLPe

[~Somehow~ @4_somehow]

– Oppfølginga av pårørande er svært mangelfull. Det kan eg med handa på hjartet seia, både av erfaringar og eigne studium, seier Svendsbø, som også har teke doktorgrad på feltet.
https://t.co/AqzkVz1mkE

[~Somehow~ @4_somehow]

@elvee57 @Dan_Wyke Exactly this! 40 years here. Remember the day I was rushed to hospital due to severe probl after virus. It tok 35 years before EDS +++ dx's. Meantime they called everything Post V Inf/ME and always said 'no treatment, no science, (have ME as well). Ended up in ♿️🛌

[Michael Kentris, DO @DrKentris]

Migraines are underdiagnosed AND undertreated

How can something that affects more than 1/10 people be overlooked so easily?

Let's talk about what migraine is AND isn't so you won't miss it when taking care of your patients!

#MedSocial30 Day 2

[~Somehow~ @4_somehow]

@julierehmeyer I feel the vary same way. Still - this place and community of ppl with same severe dx's as in my fam, is the place that helps me keep my sanity.
I've got so much important info here.
Thank you so much for this post. Finally I dear ask for an inv to the other place

[Julie Rehmeyer @julierehmeyer]

Someone DM’d me, asking for a code to the sky place, but saying she wasn’t sure she “deserved” it because she’s too sick to participate much. But it’s the sickest folks who are most important! Folks with spoons can cope better if this place falls apart. So hit me up, 🥄 or no 🥄

[Julie Rehmeyer @julierehmeyer]

It's time to get a bit more organized about this process of distributing codes to the Other place, the one the sky. I created this form you can fill out to donate or request codes. It should make the process a bit easier. https://t.co/8WEqkFVHy7

[~Somehow~ @4_somehow]

@SalamonSMD @igoe_at @TheWHN @BildungSicher @GoldaSchl @MarkedByCovid @CovidSafePlaces @LongCovidAP @zalaly @PutrinoLab @lungendoc @EricTopol Must read @4_somehow

[🕸️Dr.T, PhD @chydorina]

Antihistamines are the first line "challenge test" that
should be tried in #LongCovid #MECFS.

Start with H1, add H2. Try different OTC and rx like 'rupatadine' which also has mast cell effects.

It it helps symptoms than keep optimizing. Try adding mast cell inhibitors. Try different routes (i.e. oral, nasal etc.).

Managing symptoms is as much about OPTIMIZING and personalized treatment as the "right med". Dont get stuck in "but (insert med here) did not work for me". Not all H1 have identical mechanisms of action.

[~Somehow~ @4_somehow]

@MaxNits @cstroeckw *when they fall asleep

[~Somehow~ @4_somehow]

@MaxNits @cstroeckw My grown up daughter sometimes have exactly what you describe. Uses melatonin, but also other meds for other conditions. I just thougt it could be sleep paralyzes. Maybe I should look into this.
On her fathers side there are a kind of narcolepsia with cramps when falling in sleep

[~Somehow~ @4_somehow]

@nursekelsey Everyone, fam & friends. Even I (housebound) after 1 week. I've had a total of 5 flus in 60 yrs. We all got terribly sore throats, blocked airways, severe coughing,lost our voice, fever. Some w asthma and pneumonia. Incl young ppl. Lasted 1 month, but hoarse & cough 3 months

[~Somehow~ @4_somehow]

@TruthAutistic ❤️ Not sure if this video is relevant for you. But I really hope they listen to you and your mom. And do the right things. Best whishes❤️
https://t.co/FuMNBx3L0k

[~Somehow~ @4_somehow]

If you or someone you care about, or your patient has #EhlersDanlosSyndrome / #HypermobilitySyndrome and major #gastro problems, here is a very good explanation of what is happening for so many and why.
#EDS #HSD #POTS #MCAS #ehlersdanlossyndome

https://t.co/wKGHrey60N