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@ad8809ct
I am followed in Montreal by specialists who concluded this is an «orphan disease». I am currently taking weekly Dupixent and daily high doses of Budesonide (Entocort) opening the caplets for it to try to act higher in the digestive tract).
This unfortunately seems to be a bandaid on the condition, which nobody understands yet. It does not heal or cure anything, it barely controls the symptoms and I feel that as soon as I’ll stop it might come back worse. Further, stuff like Budesonide (Entocort) are damageable on the long term... (bone density namely).
FYI: I was tested in basically all fields at this stage (in our free public Canadian health care system) and we concluded that it’s not auto-immune issue, it’s not allergic, it’s not a known genetic issue, it’s not rhumatological, it’s not ENT, it’s not neurological, it’s not haematological… what is it then? Where does it come from? Where is it going?
An internist is following me, team work with my gastroenterologist.
In parallel I got a retinal detachment, unilateral hearing loss, and an ICT (mini stroke) at 39 yo.
Honestly I don’t know where this will lead me. This nightmare appeared during the Covid 19.
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@ebrousseau I'm interested to hear about the symptoms that led you to seeing a doctor and getting the diagnosis. Last summer, my daughter was doubled over in pain, vomiting and shaking uncontrollably, We noticed at her yearly physical that she had lost weight, and was very pale. She also has ADHD, and now she is showing less signs of that, meaning she is much less hyperactive mentally and physically, and now is presenting with more "typical" autistic tendency's (shaking hands, rocking, fixation on one object). She is also very tired or lethargic all the time. Thank you for being so open about your experience. The more I can learn the better.