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Discussion Starter #1
Hi i am looking through this site because doctors have been batting around a few illnesses and Lupus seems to be thier favourite. i am quite worried as i know little about this and have had bloods done and repeated and repeated. donyt know why they are doing this for a third time as last two were basically the same. I have raised WBC ESR AND NEUTROPHILS, i also have an ANA titre of 1:160. dont really know what these indicate but they seem to be what my gp is concentrating on. i have joined here to try and understand whats going on (maybe) but mainly cos i feel really rough and scared as nothing seems to be happening apart from i have less blood everytime i see a dr. lol:) hope everyone is well, look forward to some good chats. thanx .
angieb:)
 

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Hello Angie B,
Welcome here and yes, I am sure you do feel rough!
You clearly have something inflammatory going on. Others will be along to welcome you shortly and I will get back to you and introduce myself later-hubby screaming for laptop!
x Lola
 

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Discussion Starter #3
Thanx Lola hope hubby not screaming to loud. Dont know if i should be posting as all other threads i have read now have been diagnosed already and i am not 100% sure i have lupus.:)
ang
 

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Hello Angie and welcome :)

First off, yes, of course you should be posting. There are plenty of people here who are not yet diagnosed and plenty of people who come for support when lupus is mentioned as a possibility. Some of the hardest times for people are the pre and post diagnosis stages.

Lupus is a difficult disease to diagnose and I would say that that is why you have had your bloods done several times. Most of us do. You don't say whether your ESR is significantly raised but, as Lola said, something inflammatory seems to be going on. Your ANA is not particularly high and I presume that it is a combination of that result and clinical signs which make your docs think of lupus. A positive ANA is basically a screening test which can indicate any number of auto-immune diseases but which can also (at times) be present in people who have no auto-immune disease at all.

You mention a GP, my question here is, have you seen a rheumatologist? I would hope that your GP would be referring you to a rheumy as they are the auto-immune connective tissue disease specialists. Even then, you need to be sure that you go and see a rheumy that does specialise as some know very little about lupus and that can lead to a lot of frustration for the patient.

I would also like to mention while you are 'reading through the boards' that the people who post here are not entirely representative of the lupus population as a whole. Those who post regularly are usually newly diagnosed, in the process of being diagnosed or the rarer more severely affected people.

Once the adapted treatment has been found and had time to kick in, very many lupus patients can go back to leading nearly normal lives and don't have much time to be visiting this site.

Feel free to ask questions and we'll try to help as much as we can,
Katharine
 

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Discussion Starter #5
Hi kathrine
thanx for the welcome. this is gonna sound strange but i work on a heamo/rhuemy ward as HCA but not been there long. dont get mant Lupus patients in mainly heamo. So i know of the consultant rheumy he is v nice. Have chatted to jnr drs on ward and and they dont really know much about it as they are just on their cycles. Only patient i have ever seen on ward with lupus was havng REALLY bad flare so was quite scary as onlt week before that the dr mentioned it as poss. Just dont want to sound nuerotic, trying to be positive because even if i have lupus i still aim to do my nurse training.
ang:)
 

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Oh My God I Am Tired

just done long day at work my 2nd one this week and i am soooo tired. nearly flaked half way through. told ward manager today and she said she will see if any of drs on the ward will chat with me to give me an idea of whats what cos i am worrying a bit now. but she was cool and said to keep her informed and that if i dx with lups she will make me apt with occupational health.
hope everyone is doing well.
 

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hi angieb, im new to the website too but i thought i'd reply to your post as i'm also a HCA (at southampton general hospital on the south coast of england) and have also been thinking about starting nurse training. i was diagnosed with lupus before i started working for the nhs (in december) and went through the usual routine of occH before i was employed, and they took me on regardless of having lupus.
i dont know how far through the diagnosis process you are but it took me nearly 18 months to find out what was wrong, and its been 6 months since i started the reccomended medication and things still arent right.
you mentioned you would see your occH when/if you were diagnosed - please dont wait!! if you make your employers aware of youre situation, and keep them updated, it will make things easier if you need to take time off work. they have helped me and im sure they will help you too, if only by tracking your progress and keeping in touch with your GP, providing regular reviews and being understanding when you call in sick!
out of interest, how do you find working nights? ive just started a few and have already had the 'lupus migrane', and felt back at square one in the days that followed. id love to know how someone else with the same symptoms and job as me copes!
welcome to the website by the way :rotfl:
 

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Hi Angie,
No I placated Hubby this morning.

I have had Lupus very long term. I could not get diagnosed locally, but was diagnosed in London.
I don't work and am fairly useless but I do have other conditions too. I also have a Daughter with Lupus.
If I can help at all I am here.
 

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Hi Angie, have replied on another thread but will say again here............get thee to occie health;)
 

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Discussion Starter #10
sally88
Hi how are you? I am not tooo bad at the mo but sometimes like on monday the long day nearly killed me. and nights are a real struggle. But i ave good freinds at work and when they are on shift to we have lots of laughs so means the day is more manageable.
Thing is i sometimes feel like a fraud because i have no diagnosis of anything. I am not sure if occie will bother til i know whats wrong me never really been to them before. any way gonna go as my head is hurtingand need to wash up do dinner etc will prob be back later. keep well guys.
 

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angieb,
Welcome and you are where most of us started at, it is normal to be worried, scared, and want to know all you can. You have come to the right place it is a very good forum here. Hope to see you in chat sometime and also hope you are feeling well.
Tammy
 

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Hi all
Thanx for the welcome Tammy. Just been back to my GP he couldnt tell me much apart from the fact its sounds auto immune but edging towards lupus . but he cant tell too much till latest bloods come back:rolleyes:. Well the only thing he told me thats different is if results come back the same or higher then i will be seeing a rheumy. if they come back less he doesnt know.Been having lots of tears last couple of days, i have had it with not knowing. please tell me others feel like this , its not that i want to be told i have an illness but rather, if i have tell me so i can on with things and start treatments, ya know?
 

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hi again angieb
so far, for me (in my 6 months of knowingly having lupus and the 18 months prior to that) the worst bit is not knowing. going backwards and forwards to the GP and having the same conversations that lead no-where is so frustrating. it was such a relief for me when the doctor said "it's lupus". whether or not your doctor will tell you it its lupus or another auto-immune disease doesnt matter, just to have a diagnosis to get your head around, and a treatment to start will feel positive. we all have low days (whether or not you have lupus!) so hang in there!
best wishes, sally x x
 
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