some advice please?? ..

[PaulineW]

hi, ave Recently bein diagnosisd with lupus after having a Stroke. Iam a bit confused to be honest, because a never even heard of this disease until the doctor told me i had it. i have recently bein researching lupus and have realized i have bein Suffering Symptoms for many years without knowing what was the main Problem. I suffered kidney problems when a teenager, get extreme fatigue and depression, rheumatoid arthritis, and many more. All the Symptoms are all add'ng up. its upseting to think that if i had bein diagnosed at an earlier stage would my illness may no have progressed so badly could my Stroke may be have bein avoid'd. i understand Lupus can mimic other illnesses therefore it is hard to diagnosis. Just so hard to take in and during all my tests while bein an inpatient at hospitable have also discovered i also have an hole in my heart. which would also went undiagnosed for many years and still would have bein none the wiser if i had not bein for so many tests to determine the cause of my stroke!!.. as treatment goes i have to remain on warfin for the long hall as far as i know. But day to day is a strugle never mind dealing with effects of Lupus but also the effects the stroke has left me with since my left side was affected, am have'n trouble with mobility never mind the lupus symptoms. am jst a bit lost and struggling to deal with everything & new to this site. Any1 with any info about lupus and stroke's would be very much appreciated, Thanks!! xx

[pollyanna]

Hi Pauline, I'm sorry you've had such a bad time.

I am also new to the site and i'm still not formally diagnosed by specialist, I'm seeing him on 6th dec.

I also had never heard of lupus until my gp told me that's what he thinks it maybe, I've been seen by him with all my many strange symptoms for 13 years, but hopefully I will at least get some treatment now, so although its a horrible thing to have, I'm trying to be positive and think now things can only improve

It is a lot to take in but I have found this site to be really helpful, and everyone's so supportive, so hang on in there and I really hope you'll be feeling better soon, take care, Mandy x

[lucy-may]

Hi Pauline, I found this site 3 months ago, and its been my life line, being able to talk to others, ask any question and get positive feed back is great. Your not alone, you have had a really bad time, but hang in there and ask all the question you want, we are all here to help anytime x x

[Hidden]

Welcome Pauline. I am not surprised to hear about your confusion. As you say, it's a lot to come to terms with, especially when your whole medical history suggests that Lupus has been in your life for longer than may have been aparent. I imagine, there is a lot to take in, both in terms of the way forward with treatment.or medical intervention for your stroke and hole in the heart and of course Lupus, but also for managing your daily living just now, until things improve. You know us Lupus sufferers are a pretty determined bunch and we often find novel ways to adapt, phsycally and emotionally, but it can take time, so be kind to yourself.

Valx

[allix]

Hi Pauline, so sorry to hear about your diagnosis, it can be very scary to start with and come to terms. I too had mini strokes which were very frightning and was finally told I had APS or also known as Hughes Syndrome which came along with the LUPUS. It might be worth asking your doctor when you see him to check for this, I am on warfarin for the long term as well which seems to manage it quite well, just get the odd fuzzy head and disturbed vision which clears after a while. You must be feeling very confused as you said but help is at hand hopefully when you see the Doc. Be positive and listen to your body.

Take care and hope all goes well.

[lupie-Cathy]

Hi Pauline, So sorry to hear of your diagnosis and your stroke, It's very confusing when you get a diagnosis like that, I'm lucky that I haven't had a stroke although I do wonder whether I have had mini strokes, occasionally have some weird symptoms that could be although I know I don't have sticky blood syndrome ( Hughes). I was not diagnosed until a couple of years ago, I too have had symptoms since I was a teenager I'm in my middle 50's now! Still I'm really lucky to have survived thus far without any major problems so I'm hoping I can get to a ripe old age without any! I do have problems with my walking and have to use a wheelchair to go shopping and any long distance, luckily I have a disabled badge, but I need someone to go with me to the shops because I can't always reach things or sometimes even get into the shops! I hope you feel less confused soon and I hope you get good support from your family, good luck for the future