[medical] Achievement unlocked
Jan. 26th, 2016 06:18 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
kaberettFormal EDS-H diagnosis from the UCH hypermobility clinic.
Teeth Were Sucked over the hyperextension in my knees and hips and shoulders. I've been referred to hand therapy, podiatry, and a respiratory clinic ("that doesn't sound anything like asthma. why would they diagnose that as asthma? anyway that's an autoimmune connective tissue disorder not our thing, Dr Booth is good on this, we'll send you to Dr Booth"); my next appointment is on February 19th for physical screening, after which my physio will begin in earnest. In the meantime, I can keep slowly going with the balance work I've been doing.
They were good about my name. They were good about me being an expert patient. They were good about the wheelchair (making a point of asking why I had it and who'd paid for it, and informing each other of what was going on so nobody tried to tell me I shouldn't be using it). I have been firmly told that if my PIP medical winds up being before my diagnosis letter arrives I'm to tell them I have been formally diagnosed with etc, and that I am positively encouraged to show the DWP any and all letters that get written to me.
I am going splat with relief. (And also with fruit cake and Earl Grey and the rest of this week's episode of Elementary.)
Teeth Were Sucked over the hyperextension in my knees and hips and shoulders. I've been referred to hand therapy, podiatry, and a respiratory clinic ("that doesn't sound anything like asthma. why would they diagnose that as asthma? anyway that's an autoimmune connective tissue disorder not our thing, Dr Booth is good on this, we'll send you to Dr Booth"); my next appointment is on February 19th for physical screening, after which my physio will begin in earnest. In the meantime, I can keep slowly going with the balance work I've been doing.
They were good about my name. They were good about me being an expert patient. They were good about the wheelchair (making a point of asking why I had it and who'd paid for it, and informing each other of what was going on so nobody tried to tell me I shouldn't be using it). I have been firmly told that if my PIP medical winds up being before my diagnosis letter arrives I'm to tell them I have been formally diagnosed with etc, and that I am positively encouraged to show the DWP any and all letters that get written to me.
I am going splat with relief. (And also with fruit cake and Earl Grey and the rest of this week's episode of Elementary.)
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Date: 2016-01-28 06:05 pm (UTC)I had childhood asthma and eczema (family history of both). I appeared to grow out of them around the age of 10, then start getting problems again in my mid-teens on the lung front. The ways it looked like asthma: it was sensitive to cold, it was triggered by exercise, and it was triggered by exposure to allergens like mould/dust/mites/smoke.
Ways it does not look like asthma:
(1) My peak flow is way higher than expected for people of my height and weight (and doesn't particularly drop off during breathing difficulties).
(2) I do not test on spirometry and various other breathing tests the way that's expected for asthma.
(3) I don't respond to inhaled steroids the way that's expected for asthma. Taking a daily preventer doesn't increase my peak flow; taking a reliever doesn't increase my peak flow, if taken prophylactically gives me maybe an extra ten minutes of exposure to a trigger, and generally doesn't have the effect on my breathing patterns (as tested) as expected for asthma. Additionally, while on Seretide every passing sore throat turned into a chest infection (or, left untreated, pneumonia): this is a known side-effect for people with COPD (which I can't possibly and for that matter don't actually have, but which is a type of interstitial lung disease) but is not the case for people with asthma.
I cannot immediately find the actual comments wherein this was flagged up to me as looking like interstitial lung disease, but I *can* readily dig out the documents I was e-mailed that provide a sort of overview of the medical literature on the topic, if you're interested?
(no subject)
Date: 2016-01-29 09:43 am (UTC)My Lung Stuff is basically: I got bronchitis when I was a baby and then a zillion more times as an older child, and eventually I developed a chronic hacking cough. Using inhaled corticosteroids for a while made the cough go away. I've always been sensitive to cold, exercise, and smoke--any of those can make the coughing come back. Too-intense exercise, especially in the cold, can cause me a coughing-type asthma attack-ish phenomenon. My lung capacity is... not awesome, and most of my colds become bronchitis.
My doctors' approach has always just been "this is Lung Stuff of some kind, let's assume it's asthma and throw drugs at it" so I don't really have the data to say it is or isn't. I suppose I don't really need to, since we did find something that worked.
(no subject)
Date: 2016-01-26 10:51 pm (UTC)And double yesss! for "that doesn't sound anything like asthma. ... that's an autoimmune connective tissue disorder.
And fantastic attitude towards DWP! (and everything else).
Slightly jealous now (but in the still glad for friendperson way).
(no subject)
Date: 2016-01-26 10:56 pm (UTC)There's definite potential for a 'That's no moon' line here!
(no subject)
Date: 2016-01-27 02:49 am (UTC)(no subject)
Date: 2016-01-27 03:33 am (UTC)(no subject)
Date: 2016-01-27 04:23 am (UTC)I'm so glad for you.
(no subject)
Date: 2016-01-27 04:38 am (UTC)(no subject)
Date: 2016-01-27 04:40 am (UTC)<333
(no subject)
Date: 2016-01-27 06:20 am (UTC)(no subject)
Date: 2016-01-27 07:38 am (UTC)(no subject)
Date: 2016-01-27 10:08 am (UTC)hurray for getting all the paperwork in order to and relevant things checked off in time for dystopian assessments, because if you have to go through more you might as well be able to BURY THEM IN DOCUMENTATION.
*cough*
*fistbump of solidarity*
(no subject)
Date: 2016-01-27 11:09 am (UTC)(no subject)
Date: 2016-01-27 01:35 pm (UTC)(no subject)
Date: 2016-01-27 05:02 pm (UTC)Militant Tendonsy
Date: 2016-02-06 02:25 pm (UTC)Knowing so many people with connective tissue disorders - EDS included - gives me cause to worry. I'd never heard of it a decade ago.