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Biomarker for Diffuse Scleroderma skin has been discovered!


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Plot and lost...


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#1 KeiKei

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Posted 22 September 2011 - 05:39 AM

So, having showed up to my rheumatology appointment nearly two weeks early, I was ushered in to see the tummy doctor instead (luckily for me they're in the same department!) Someone I hadn't met before. Young, attractive, from Portugal. Pleasantries were exchanged. I hope. I forget. Too busy drooling. :blush:

Ahem. MRE results were back and just confirmed what they already knew, which was not a lot. I’m just glad the pictures came out clear. I am not subjecting myself to that again any time soon! The good news is nothing extra was found. So I'm not any iller than they suspect. Whoo hoo! The main tummy doctor popped his head in to do a quick review – nice of him to drop in – and asked if I’d been to the Royal Free yet. My Jedi mind powers amaze me sometimes. Down it went on my notes for the Professor and I was sent on my merry way.

Saw the Professor two weeks later (the actual Professor, not one of his lackeys) and reviewed my file and scans – I am actually genuinely interested in the pretty pictures. He said he couldn’t see anything off kilter, but admitted to not being the expert and said he’d refer me to the Royal Free. Day out in London! He listened to my chest, said all seemed okay, but some area sounded louder than he thought it ought to.

I’m also vitamin D deficient (hummm, more sun. I think a holiday in the Caribbean is the correct way to fix that…one can only daydream) and that oddly my blood works show either no sign of SCL 70 or no unusual activity with the count. I forget. I have to go back to the general practitioner at some point to become a guinea pig for the Raynaud’s and they’re booking me in for some physio on my hands, as they’re becoming more and more claw like. And are actually starting to hurt, which is a new one.

Work has finally provided me with my own private little fan heater, so now everyone is jealous, as I’m the only one not wearing coat and scarf. And just in time for winter. It’s nailed to my desk during the day and kept under lock and key at night. Too many hungry eyes keep straying towards it.

So, happily ticking along really. Ciao for now!
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#2 Joelf

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Posted 22 September 2011 - 06:44 AM

Hi KeiKei,

Well, that does sound as if you've had two quite satisfactory appointments, with the added bonus of some enjoyable eye candy!! ;) :lol:

Sorry about the Raynaud's and also the beginnings of sclerodactyly in your fingers; hopefully the physiotherapy will improve this for you. Don't worry too much about the blood test results as they can be misleading and shouldn't be the only means of determining whether or not you have Scleroderma. Quite a few of our members have had negative blood test results and yet undoubtedly have the full blown disease and vice versa.

How lovely that you have your own heater; no wonder the rest of your colleagues are eyeing your desk with envy! Perhaps you could organise a webcam so you can keep tabs on it at all times!! ;) :lol:

Kind regards,

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#3 Amanda Thorpe

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Posted 22 September 2011 - 01:40 PM

Hello KeiKei

Well not getting any worse is something to celebrate for sure! :woohoo:

Oh I remember well the days of office heaters and fans being in demand...so glad I am out of that now! :yes:

Take care.
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#4 KeiKei

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Posted 24 October 2011 - 11:02 AM

Hi,

Joelf, I like your suggestion and wish to implement it! Now, to bribe the IT department to allow a webcam. I can honestly say, I am surprised to still have the fan heater. After a few days of holiday, I come back expecting to find a ransom note. Don't think anyone's thought of that. And I may have just voiced that aloud. Oops!

Have now had confirmation of my dinner and theatre date in London. Erm, I mean my appointment at the Royal Free.

Have seen the physio and occupational therapist. Some handy hand exercises that I can do at work and in the car... just need to remember now!

One, two, miss a few, nighty-nine, one hundred! Time to go home. Laterz!
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#5 Joelf

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Posted 24 October 2011 - 11:18 AM

Hi KeiKei,

Glad to hear you've now received confirmation of your dinner and theatre date appointment at The Royal Free Hospital.

Do let us know how you get on, won't you?

Jo Frowde
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#6 Shelley Ensz

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Posted 24 October 2011 - 12:49 PM

Hi Keikei,

I just want to say hello, and thank you for the few good chuckles I've had reading this thread this morning.

Although I wouldn't want anyone to ever get any sicker just for the pure entertainment value, the thought did cross my mind of the nefariously interesting ways you would go about phrasing your encounters with various sorts of medical tests and symptoms that come our way with scleroderma!

:emoticons-group-hug:
Warm Hugs,

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#7 KeiKei

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Posted 26 October 2011 - 03:33 AM

Hi Shelley,
Your post has made me chuckle. :)
By all accounts I may still have surprises in the pipeline to look forward to. I just hope when it's my turn, I can hold it together as well as the people who have this condition far worse than I do and have had to put up with it for longer. It's still a fairly new novelty for everyone.

Guess that's my ten minute tea break over with as I'm actually being asked to do some work. Ho hum. Bit of a slow day otherwise.
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit