Well where do i start, this is all a bit new to me and i must admit it scares me. I havent been diagnosed with Lupus but have been told i have Undifferenciated Connective Tissue Disorder and will most likely be diagnosed with Lupus within the next 10yrs.
My story starts when i was 13, i was diagnosed with Scoiosis and had 2 curves one at 29 degrees and one at 52 degrees, i was told i would have to wear a full back brace and will have to have a spinal fusion, at 13 i didnt quite understand it all and i think i coped quite well. At the age of 15 i was taken out of the back brace and was scheduled in for surgery, most people hear me say ive had a spinal fusion and they appologise (i dont understand why its not there fault). I had the opperation in july 2003 it was a huge sucess, i know have a 12degree and a 20 degree curve.
Whilst in HDU when the doctors removed my breathing tube my lungs refused to start up again, we figured this was due to the movement of my lungs and rib cage during the opperation i think differently now that i have UDCTD, unfortunatly my poor mother was sitting by my side whilst this happened and had to watch me being revived.
After coming through the opperation we thought the worst was over and there would only be a few more doctors visits.
I was always told that i would have aches and pains and would get arthritis.
For the next two years i noticed more and more pains and just put it down to "my back"
All hell broke loose about april last year.
One thursday morning i woke up with dry itchy eyes, i figured it was an allergy so brought some eye drops to clear it up. Saturday morning came and my eyes were now weeping a sticky substance kind of like a small amount of puss but not as yellow, i thought straight away conjuntivitis so off to the doctors who confirmed it and gave me some eye cream to rub into my eyes. A week passes and nothing has changed, my vision is going blurry and my eyes are puffing up like i havent slept in weeks, i take another trip down to the doctors and ask what the hell is going on, the doctor seems quite puzzled (not my normal GP) does a test to make sure i havent damaged my eye and tells me its an allergy so im back on the same eye drops i was taking earlier. The next monday i start a new job and my eyes are the worst they ahve ever been, i looked like i was crying out of one eye all week, i couldnt open my eyes outside even with sunnies on, id had enough so i went back and saw my normal GP, he agreed with the other doctor and said its probably an allergy but we will do some blood tests, could be lactose inntollerent. All tests came back negative still no answers and noone can even think what it could be. about this time i had a small bruise forming on my right shin, i just thought id bumped it. My GP has now given me an eye specalist to go see, he has told me i have something growing in my eye and gave me eye drops which "cleared" it up according to him, on my last visit to him i asked why my vision was still blurry he tested me and im now short sighted. In january of last yr i had an eye test was told i needed reading glasses and would maybe in a few yrs time need short sighted glasses.
So now 4 months after having my eyes tested i went back to see if they would change the lens for me as clearly they had made a mistake, they then told me they didnt like the specalist and they wanted a second oppinion, so off to idiot specalist number 2.
First appointment with idiot #2 and he thinks its an eye infection, i told him i had been tested 2 weeks earlier for an eye infection and the results came back negative but yer sure go ahead do the test again. So i have the test again :roll:
Back for the results from idiot #2 and he tellsme the test results have come back negative and the infection has gone away.....im sitting there thinking ummmm what infection THERE WAS NO INFECTION TO START WITH IDIOT dad argued the point they my eyes werent getting better infact they were getting worse as now i was seeing white glows and it takes up to 30secs for my eyes to focus, i think my dad was ready to kill him, we left with the doctor saying give it a month come back and it will be cleared up.
During the month of waiting for the next appointment the bruise on my shin had grown into a big wierd lump that when you pushed it in it wouldnt bounce back straight away, it was painful to walk on so i went to a GP down the road from work, he said it was Erythema Nodosum and took a blood test to make sure, when i went back for the results it appeard it was going down so we thought nothing of it and left it at that.
I later researched it on the internet and it looked like it could be linked back to my eyes so i went back to my normal GP who tested for many immune diseases but nothing came back a perfect match so he refered me to a rehumatoidologist, my first appointment with her was on 8th December 2006, another month away.
After this new news we went back to Idiot #2 and told him what was going on he refered me on to another eye specalist in the Lions Eye Institute. She is a Great doctor, she has diagnosed me with Blepheritis which is where you dont produce enough oils to coat your eye, and i am also 100% sure im short sighted now. i Havent been back to this doctor since seeing "arthritis Doc" so things might still change as my eyes are still producing alot of "eye boogers" as i call them.
I have now been to the Arthritis Doc and have as i said before been diagnosed with UCTD.
Is there anymore Scoliosis and Lupus sufferers, is it connected some way?
I joined here hopefully to get more info some support and some help knowing where to start.
I have great friends and family and a great partner, but its hard to talk to them, i dont want my mum to know half of the pains i go through as i think she has suffered seeing me in pain enough. I find everyone is quick to give you answers to your problems but noone is willing to listen.
Thanks for reading my story :lol:
I will come back laster tonight and tell you a bit more into depth on my UCTD, im at work at the moment. :lol:
hi there and welcome! wow, you've been through a lot!! this is a great place to be where you will find lots of support and information. i'm not the best person to give you lots of answers because im still learning my self. i did have very mild scoliosis as a child, but it doesn't give me problems now. my lupus flared up while i was pregnant in 2001 (they think) and in 2004 is when all lupus hell broke loose! :P come to think of it, i forgot that i broke my tail bone while deliverig her early... she was too small for that to have happend, so i think that was the the scoliosis???
anyway, come back soon, i'm usually on the board late, on west coast time, and we'll all talk. try to stay positive ok!
Hi Angela, i dont really think of scoliosis as much compared to the UCTD ive never really known anything other than a bad back, whereas with UCTD ive lived without the pain so its hard to come to terms with.
Your bones could be weaker due to the scoliosis and that may have caused the break.
When i first went to my Rhumie i was given Prednisolone and Diclofenac Sodium to releive my pains, in the beggining i didnt really feel all that much pain as i had programmed myself to think it was normal, but slowly as i have begun to accept my fate it has been getting more and more painfull, today was the first day ive actually sat at my desk at work and thought i think im in too much pain to be here i have to go home.
After my second visit to my rhumie i was taken off the Diclofenac Sodium (replaced with Proxen SR), had Prednisolone reduced to 15mg from 25 and started on Plaquenil. I started these over christmas and have never felt more ill, we believe the Plaquenil was playing up, so much so that i fainted and blacked out for a few seconds, we then with advise from GP reduced it down to one tablet from 2 and i felt fine on that amount.
My third visit brought the news of having UCTD, my doseage of Prednisolone reduced again to 12.5mg and plaquenil increased back to 2 tablets. i feel ok on the plaquenil now, but have really bad stomache pains (doc says due to Proxen SR) and have a lot of excess gas, im also experiencing chest pains and shortness of breath without doing anything, and for the last 6 days ive had a sore throat is this normal?
My last visit to the doc brought the news that my kidneys are all ok :lol: im now on 10mg of Prednisolone have been taken off the Proxen SR to relive my belly and am now on celebrex, the Plaquenil still seems to be ok, has anyone had this sort of reaction to it?
i have so many questions that i cant remember them all :?
does anyone else think Lupus might be connected to Scoliosis in some way?
What do the rashes look like i dont think i have any but it would be nice to know whats normal and whats not?
what foods can i and cant i eat?
i have this overwhelming feeling that its all in my head and im just making the pain up, does anyone else feel this way? is it normal?
i feel lost i dont know where to begin, where do i start? do i have to make a special food plan an exercise programme?
Thats all the questions i can remember right now, ill be back if i have any more :lol: