Discover and read the best of Twitter Threads about #mcad
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@teaze_r @RedactedMom 1-) hEDS can not be detected w/ a genetic test. My child has an EDS gene in which I am positive that I am the one who passed it down. However they dismissed that gene mutation as a Variation of Unknown Significance, (VUS).
However scientists appear to be way ahead of that...
However scientists appear to be way ahead of that...
@teaze_r @RedactedMom 2-) ...geneticist because when I looked it up, having 1 copy of that mutated gene CAN cause problems. The mutation that I am talking about is a mutation in the COL12a1 gene. ncbi.nlm.nih.gov/pmc/articles/P…
@teaze_r @RedactedMom 3-)... My 1st sign of having this mutation was Clinical Carpal Tunnel Syndrome. My 2nd sign was Plantar Facitus, however at the time that I started having those problems I didn't recognize either problem as being a part of something as a whole. The next sign that I can think...
Je sais pas si ça va beaucoup servir mais j'ai tellement galéré pour trouver des infos que je me dis qu'il doit bien y avoir d'autres gens dans le même cas que moi.
Donc c'est parti pour un thread SAMA/Mastocytose/MCAS/MCAD
#SAMA #mastocytosis #MCAS #MCAD #chronicdisease 1/
Donc c'est parti pour un thread SAMA/Mastocytose/MCAS/MCAD
#SAMA #mastocytosis #MCAS #MCAD #chronicdisease 1/
Déjà à la base c'est quoi SAMA/Mastocytose/MCAS/MCAD ?
SAMA = Syndrome d'activation mastocytaire. MCAS et MCAD sont les versions Anglaises sous lesquelles on trouve le plus d'infos et Mastocytose c'est le nom de la version évoluée dont j'expliquerais brièvement la différence. 2/
SAMA = Syndrome d'activation mastocytaire. MCAS et MCAD sont les versions Anglaises sous lesquelles on trouve le plus d'infos et Mastocytose c'est le nom de la version évoluée dont j'expliquerais brièvement la différence. 2/
Mais pour les besoins du thread et être plus concise, je parlerais de SAMA tout du long. 3/
According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake.
So when in #unrestfilm I say, "I can feel my brain pushing out my eyeballs" that is apparently true.
Of course I have been saying this for years, most notably when at the @GlendaleHosp ER last month, where I was diagnosed with "anxiety" and torticollis (tilting of the neck), even though the issue was that my neck COULD NOT TILT.
