#LongCovid recovery story is long but short notes here:
#POTS confirmed with heart rate variability test & started on Ivabradine.
#MCAS treated based on clinical symptoms with Desloratadine, Famotadine, Montelukast-Cetrizine
#autoimmune assays done - #rheumatoidarthritis
Started on Methotrexate after all vaccinations. GI motility treated with Prucalopride.
Lung perfusion abnormalities but no cause detected (#microclots in blood) - treated with budesonide + tiatropium inhalers, ipratropium nebuliser & supplemental oxygen. #NEISvoid
Weekly IV infusions with Saline at home. Pulmonary rehabilitation. Eyes checked - connective tissue degeneration- tear film corrected with refresh tears & gel, special glasses & convergence exercises given.
Ultrasound therapy for costocondritis pain & isometric exercises for the neck. Relative adrenal insufficiency is on file & will be followed up. Intracranial hypertension is on file & will be followed up. Periods are sort of regular with homeopathic treatment. I have a carer.
All thanks to 14 excellent doctors @SRMC_official. #chronicillness #LongCovid
I've had a detailed ECHO to rule out heart abnormalities, a High resolution chest CT, CT Pulmonary Angiography to rule out PE, Lung Perfusion scan which detected abnormalities, Pulmonary function tests, ACTH stimulation test, fundus check, Brain & Cervical spine MRI.
Immuno assays (anti-CCP, RF, SLE), technitium bone scan which showed polyarthritis (plus anti CCP positive so RA diagnosis). Full GI work up - endoscopy, colonoscopy. ENT work up. MRI & Ultrasound for endometriosis.

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More from @renudhinakaran

May 18
Today is my appa's birthday and of course I wished him good health & peace, expressing my love. He said something that shook me: "You've made me worthy of my life." 1/ #parenting
As someone who grew up with a yearning for approval from my father, this should have felt amazing. Strangely, it didn't. I mean it felt nice to hear, sure, but I felt no sense of achievement or pride or vindication. That, to me, is the true achievement here! 2/
It has taken years of therapy and living through endless struggles to realise what a good (albeit flawed) person I am - someone who never gives up & is always there for those who need me. That is enough. That should be enough. 3/
Read 4 tweets
Oct 24, 2021
22 months ago, when my brain MRI showed partially empty sella, I asked 5 doctors if it had anything to do with my symptoms. I was dismissed instantly with not a single ounce of consideration. #NEISvoid #MedTwitter 1/
This was despite the fact that I was starting to show hormonal changes. As my symptoms progressed & I was sent from one specialist to another, no one bothered to see if they had a hormonal basis - including 3 endocrinologists & a gynec- except to ask me to go on the pill. 2/
Going on the pill gave a migraine for nearly 3 weeks that needed morphine to even just breathe. No wonder! BCP are known to make intracranial pressure worse, which is not ideal if you have a partially or fully empty sella. 3/
Read 12 tweets
May 12, 2021
Today's #MyEDSChallenge is about doctors/nurses.
Epidemics, Book I, of the Hippocratic school says to doctors: "Practice two things in your dealings with disease: either help or do not harm the patient". Every chronic illness patient has seen doctors who have violated this. 1/6
First there were the doctors who didn't even bother to see us. Next the ones who saw but didn't care enough to do anything. After that came the ones who didn't know what they were doing but did it anyway, our bodies & minds be damned. 2/6 #MyEDSChallenge #NEISVoid
Later came the doctors who thought they knew best & asked us to not research about our own bodies. We were tossed & turned through CBT & GET repeatedly until our bodies & minds broke. If we are lucky & our stars align, we may find those rare doctors, #MyEDSChallenge #NEISVoid 3/6
Read 6 tweets
May 12, 2021
#NEISvoid, #ParentingwithPain chat is this Saturday, 15 May, 6 - 7 PM CET. You can find the #twitterchat guidelines: apainfulidentity.com/uncategorized/…
Q1: How do you prepare your child(ren) for the uncertainty that chronic illness causes in your life (cancelled plans, for ex)? 1/3
Q2: Have you had to take your child(ren) to your medical appointments? How did you handle it? Were they overwhelmed?
Q3: If you are in a relationship, how do you divide your parenting tasks? Is there any resentment from your partner on how this is done? 2/3 #ParentingwithPain
Q4: How involved are you in your child's day to day activities (meal prep, school run, homework assistance, etc)?
Q5: For parents of older children, has your relationship gotten better or worse as your children grew up?
#ParentinwithPain #NEISVoid #twitterchat
Read 4 tweets

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