rosa_rn

hEDS POTs MCAS (ASD/SPD) mom to NF1 ASD Celiac HDS hEDS SPD Hypothyroid grandma to ASD hEDS, ADHD, SPD

[rosa_rn @rosarn6]

@SimaSistani @OprahDaily @Oprah @AskDr_Rachel @askdrfatima You mentioned connective tissues…in recent research MTHFR snps have come to be involved in some-40% of the pop have these snps - they can also contribute to obesity-have you consider offering testing and supplements to help people achieve & maintain wt loss?

[rosa_rn @rosarn6]

@AHinkle628 My symptoms have improved greatly on ketotifen- the TMJ flares are spacing out-hope you find relief.

[rosa_rn @rosarn6]

@AHinkle628 My TMJ flares with mast cell activation- do you have other MCAS symptoms?

[rosa_rn @rosarn6]

@HBMastCells A screening tool with treatment options: https://t.co/OPL2ilSekQ

[rosa_rn @rosarn6]

@chydorina Considering that 30-60% of people have a mthfr mutation that causes a backup in the excretion of histamine that mast cells release, decreasing thresholds to reactions isn’t considered- many also have GI involvement which also affects folate absorption.

[rosa_rn @rosarn6]

@dricardogil Algo que no se menciona es que son los cytokines de las cellulas mastocitos que causan Muchos symptomas molestos y promotan circulation Al tumor. Ketotifen le ah ayudado ah mi hijo con sus symtomas de activacion de mastocitos.

[rosa_rn @rosarn6]

@3TomatoesShort @POTSActivist It blocks the receptors but doesn’t stop the release or facilitate the excretion-hence why stabilization of the mast cell is important. The cytokines cause leaky, lax vessels & can even cause cardiac vasospasm which I think is overlooked (kounis syndrome)

[rosa_rn @rosarn6]

@kadamssl The PTSD is real! When seeing multiple practitioners and each visit triggers &sets you back….I try to rationalize that it’s the system burning them out, but take it out on administration not the patients. Many are well versed because we are desperate not trying 2B disrespectful.

[Kathryn @kadamssl]

Have you ever read something that left you speechless? I have so many thoughts and feelings about this article - ones that I can't express with any sort of coherence at this time.

What I can say: clinicians READ THIS 👇

We must ALL do better.

https://t.co/zvTwUS3Atk

[rosa_rn @rosarn6]

@EmLyWill Have you looked into the connection between mast cells and degenerative disk disease? Those cytokines ….increases laxity and cause the bulges to stretch causing compression pain and an inflammation cycle. Many research papers on it.

[rosa_rn @rosarn6]

@maxemilysm My hope would be that it would open the door to obligate PCP and pediatricians to assess for hypermobility in order to obtain informed consent for boosters .

[rosa_rn @rosarn6]

@AZebress And you have EDS! My bet MCAS (esp if u/have IBS too)- if you tolerate herbal stabilizers (or ketotifen) and remove the trigger - btw if you stabilize the mast cells you may find you won’t be as lax.

[rosa_rn @rosarn6]

@AZebress Have you looked into MCAS as the underlying cause? It’s co-morbid and those cytokines may be the culprit.

[rosa_rn @rosarn6]

@EndemicPrepared @drajm All healthcare providers Physicians /NP/PA/RN really should have neuropsych testing post Covid. I had brainfog prior to Covid. I was a danger, unintentionally, but the thought of loosing insurance, income, identity kept me wking longer than I should have.

[rosa_rn @rosarn6]

@OnlyEnnui @Ilikebirbs1 Tinnitus Definitely does decrease, but it also is a signal for breakthrough triggers. If I eat certain things and I either get ringing or itching in my ears I know my mast cells degranulated. Not as often or severe since on 8mg ketotifen. Ringing now but I ate a known Trigger

[rosa_rn @rosarn6]

@bluejayfarley @dyingmadaboutit @PDArebellion They touch on the biology in this site https://t.co/uTlitg2uxh

[rosa_rn @rosarn6]

@bluejayfarley @dyingmadaboutit @PDArebellion Jay, this article is re:mastocytosis but the mechanism is the same as the mast cells are releasing the cytokines. The following link is MCAS paper https://t.co/VJRqImvF1o

[rosa_rn @rosarn6]

@bluejayfarley @dyingmadaboutit @PDArebellion https://t.co/HURdEGcAnp

[rosa_rn @rosarn6]

@dyingmadaboutit @PDArebellion The research to mast cell contribution to ALZ early. There’s a higher incidence of alz with antihistamine use could it be because you quiet histamine but not the other cytokines released by mast cells causing damage and oxidative stress that can’t be handled.

[rosa_rn @rosarn6]

@dyingmadaboutit @PDArebellion I have ptsd w/MCAS,stress releases cytokines that cause neuroinflammation-memory, executive functioning, sensory processing all go out the window for days2weeks depending on the experience of the encounter never back to baseline. Mast cells found around amyloid plaque