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Hello
I found this site after having a bit of a worrying hospital visit earlier on today. I'll start from the beginning so apologies in advance if this gets a bit confusing! I'm mildly dyslexic too, so sorry for the bad spelling..
I was diagnosed with ITP (platelets between 20-80) and eczema when I was 11 (I'm 22 now). When I was 16 I had glandular fever and subsequently developed all the symptoms of chronic fatigue syndrome (tiredness, acheyness). I was diagnosed with this aged 18, and then a year later also with fybromialgia as the pain in my muscles was so bad I could hardly walk. In the past couple of years I've also been diagnosed with chronic cystitis, sinisitus and kidney infection, ulcers in my mouth/nost and Raynauds syndrome. My doctor believes I have PCOS and from the associated symptoms I'm inclined to agree! All these conditions are still there and causing problems most days - I pop painkillers like smarties. Additionally I'm currently being seen by neurology at present for suspected narcolepsy.
So, back to today. About four weeks ago, I developed such gritiness in my eye that I was taken to casualty, and now having been on different steroids and antibiotics, I've been told that I have such dry eyes that I've developed corneal ulceration (its painful!). Its affected my vision so it was obvious that something was wrong... this I'm told could be linked to having dryness in my mouth that's there all the time, I was told it might be something called Srogens (?!) Anyhow, the opthamologist I saw was interested that I was tested for lupus when diagnosed with fybromyalgia, and has asked me to go back to a rheumatologist to check in and inform them about the problems with my eyes.
This is all a bit overwhelming, I've got to admit I feel ridiculous going back to my GP with something else to add to my file (which weighs the same as a small rainforest I think!) and a bit concerned that lupus has been mentioned again - I don't know a great deal about it. To be honest, I feel a bit like something is playing a nasty pick and mix game with my health, and its a wait and see game to see which system in my body fails next (they don't usually take it in turn tho!) Could someone belay my worries on this please, whatever is going on is causing me a lot of worry (did I mention its naturally quite stressful and making me depressed?!) - I'd really just like a body that works.. As I was diagnosed such a long time ago I don't have a rheumatologist anymore, nor a haematologist, a group of GPs just monitor me and I struggle on through uni (I've got my finals in a month yippeee! That'll be the end of four years of missing so many classes from being ill/in hospital that I may as well have not paid for the tuition!!)
As there are quite a few things going on, should I make a list of everything that's causing problems, and has done recently and take it with me? Something in the mix is affecting my memory and concentration, and, I get the feeling I'll forget something when going in this time.. :hehe:
Any advice/any ideas/comments on if this sounds like lupus would be greatly appreciated. I'm at the point where after ten years I'd just like to know what's going on..I understand that lupus is the 'greatest mimic' in the world of medicine and is difficult to diagnose, so if there's some way I can ease the process of finding out if it is or isn't that, I'll do it!
With best wishes, love and health to all
Kate
I found this site after having a bit of a worrying hospital visit earlier on today. I'll start from the beginning so apologies in advance if this gets a bit confusing! I'm mildly dyslexic too, so sorry for the bad spelling..
I was diagnosed with ITP (platelets between 20-80) and eczema when I was 11 (I'm 22 now). When I was 16 I had glandular fever and subsequently developed all the symptoms of chronic fatigue syndrome (tiredness, acheyness). I was diagnosed with this aged 18, and then a year later also with fybromialgia as the pain in my muscles was so bad I could hardly walk. In the past couple of years I've also been diagnosed with chronic cystitis, sinisitus and kidney infection, ulcers in my mouth/nost and Raynauds syndrome. My doctor believes I have PCOS and from the associated symptoms I'm inclined to agree! All these conditions are still there and causing problems most days - I pop painkillers like smarties. Additionally I'm currently being seen by neurology at present for suspected narcolepsy.
So, back to today. About four weeks ago, I developed such gritiness in my eye that I was taken to casualty, and now having been on different steroids and antibiotics, I've been told that I have such dry eyes that I've developed corneal ulceration (its painful!). Its affected my vision so it was obvious that something was wrong... this I'm told could be linked to having dryness in my mouth that's there all the time, I was told it might be something called Srogens (?!) Anyhow, the opthamologist I saw was interested that I was tested for lupus when diagnosed with fybromyalgia, and has asked me to go back to a rheumatologist to check in and inform them about the problems with my eyes.
This is all a bit overwhelming, I've got to admit I feel ridiculous going back to my GP with something else to add to my file (which weighs the same as a small rainforest I think!) and a bit concerned that lupus has been mentioned again - I don't know a great deal about it. To be honest, I feel a bit like something is playing a nasty pick and mix game with my health, and its a wait and see game to see which system in my body fails next (they don't usually take it in turn tho!) Could someone belay my worries on this please, whatever is going on is causing me a lot of worry (did I mention its naturally quite stressful and making me depressed?!) - I'd really just like a body that works.. As I was diagnosed such a long time ago I don't have a rheumatologist anymore, nor a haematologist, a group of GPs just monitor me and I struggle on through uni (I've got my finals in a month yippeee! That'll be the end of four years of missing so many classes from being ill/in hospital that I may as well have not paid for the tuition!!)
As there are quite a few things going on, should I make a list of everything that's causing problems, and has done recently and take it with me? Something in the mix is affecting my memory and concentration, and, I get the feeling I'll forget something when going in this time.. :hehe:
Any advice/any ideas/comments on if this sounds like lupus would be greatly appreciated. I'm at the point where after ten years I'd just like to know what's going on..I understand that lupus is the 'greatest mimic' in the world of medicine and is difficult to diagnose, so if there's some way I can ease the process of finding out if it is or isn't that, I'll do it!
With best wishes, love and health to all
Kate
