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hi, i have just been diagnosed with lupus and am in a state of shock. don't know much about the condition and got no help from my gp. waiting for hospital appt. gp said look it up on the internet!!! can anyone help?
diagnosis
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Hi there and welcome to the board.
You have found a great place to come for support, knowledge and friendship.
I was recently dx with Lupus too so I am learning but I can tell you the folks here have taught me so much.
There are links with this board that you should utilize and read all you can.
Also, a great book I recommend to folks newly dx with Lupus is called, "The Lupus Book" by Dr. Daniel Wallace.
It is a must have and written in layman terms. Amazon has it and so does Barns and Noble.
Hope to get to know you better. Take a deep breath, Lupus is not a death sentence. Knowledge is power and once you learn about Lupus and have a better understanding of it you will cope with it better. I think we all go into shock when first diagnosed.
What are your symptoms and how did they diagnose you? Abnormal bloods?
Also, join us in the chat room sometime. Purple tool bar at the top of the page will get you there.
Hope to chat with you and take care.:wink2::wink2::wink2:
You have found a great place to come for support, knowledge and friendship.
I was recently dx with Lupus too so I am learning but I can tell you the folks here have taught me so much.
There are links with this board that you should utilize and read all you can.
Also, a great book I recommend to folks newly dx with Lupus is called, "The Lupus Book" by Dr. Daniel Wallace.
It is a must have and written in layman terms. Amazon has it and so does Barns and Noble.
Hope to get to know you better. Take a deep breath, Lupus is not a death sentence. Knowledge is power and once you learn about Lupus and have a better understanding of it you will cope with it better. I think we all go into shock when first diagnosed.
What are your symptoms and how did they diagnose you? Abnormal bloods?
Also, join us in the chat room sometime. Purple tool bar at the top of the page will get you there.
Hope to chat with you and take care.:wink2::wink2::wink2:
Joined
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2 Posts
Hi ,
Thanks for the reply, it's nice to know other people feel the same way.
Yes, diagnosis from bloods.
Been having really bad joint pains and pins and needles. Also have sufferred with depression. Looking back I think this must have been with me for some time. Night sweats, depression back and joint trouble. Miscarriages in the past. Ulcerative colitus and bouts of depression.
perhaps its best to know it stops me from feeling it's my imagination always feeling knackered and shattered trying in vain to cope with the housework and working full time.
What are your symptoms? and how are you coping.
Sandra
Thanks for the reply, it's nice to know other people feel the same way.
Yes, diagnosis from bloods.
Been having really bad joint pains and pins and needles. Also have sufferred with depression. Looking back I think this must have been with me for some time. Night sweats, depression back and joint trouble. Miscarriages in the past. Ulcerative colitus and bouts of depression.
perhaps its best to know it stops me from feeling it's my imagination always feeling knackered and shattered trying in vain to cope with the housework and working full time.
What are your symptoms? and how are you coping.
Sandra
Dear Sandra,
There are some very outdated and gloomy sites about Lupus. I am glad you ended up here as this is trustworthy. You will soon learn.
When you start some treatment things will improve but it can take a little while to get the treatment right. Also it is very hard explaining to friends and family when all this is so new and you aren't sure of your own feelings. We have all been there and will help you all we can.
x Lola
There are some very outdated and gloomy sites about Lupus. I am glad you ended up here as this is trustworthy. You will soon learn.
When you start some treatment things will improve but it can take a little while to get the treatment right. Also it is very hard explaining to friends and family when all this is so new and you aren't sure of your own feelings. We have all been there and will help you all we can.
x Lola
Joined
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1,471 Posts
Hi Sandra
Welcome to the Forum. Im sorry about your news but please dont panic. There are good treatments out there and lots of helpful advice and support on these message boards.
Who diagnosed you? Have you been to a specialist? Its usually a Rheumatologist who diagnoses people with Lupus. If it was your GP who told you, please remember that it is a rare GP that fully understands this condition and it can take a lot of detective work to be diagnosed with Lupus. Sometimes there are other explanations for our symptoms as Lupus can mimic many other diseases.
Do you know what blood tests were carried out? You mentioned that you have a history of miscarriages. There is a condition called Antiphosphilipid Syndrome (also called Hughes Syndrome) which is associated with miscarriages and one of the blood tests for this condition is called the Lupus anticoagulant. I wonder was this blood test carried out and if so was it positive? Its actually badly named because it has nothing to do with Lupus itself although the condition can present as a secondary condition to Lupus. It can also be a primary condition in and of itself with no other evidence of Lupus. Here is a link which you might find helpful. Have a look and see if any of the symptoms ring any bells.
http://www.hughes-syndrome.org/
When do you have your hospital appointment? Im sure it can't come around quick enough for you. If you need any help or advice for that appointment please ask.
In the meantime welcome again and we will do all we can to help and guide you.
Take good care
Joan:rose:
Welcome to the Forum. Im sorry about your news but please dont panic. There are good treatments out there and lots of helpful advice and support on these message boards.
Who diagnosed you? Have you been to a specialist? Its usually a Rheumatologist who diagnoses people with Lupus. If it was your GP who told you, please remember that it is a rare GP that fully understands this condition and it can take a lot of detective work to be diagnosed with Lupus. Sometimes there are other explanations for our symptoms as Lupus can mimic many other diseases.
Do you know what blood tests were carried out? You mentioned that you have a history of miscarriages. There is a condition called Antiphosphilipid Syndrome (also called Hughes Syndrome) which is associated with miscarriages and one of the blood tests for this condition is called the Lupus anticoagulant. I wonder was this blood test carried out and if so was it positive? Its actually badly named because it has nothing to do with Lupus itself although the condition can present as a secondary condition to Lupus. It can also be a primary condition in and of itself with no other evidence of Lupus. Here is a link which you might find helpful. Have a look and see if any of the symptoms ring any bells.
http://www.hughes-syndrome.org/
When do you have your hospital appointment? Im sure it can't come around quick enough for you. If you need any help or advice for that appointment please ask.
In the meantime welcome again and we will do all we can to help and guide you.
Take good care
Joan:rose:
Hi up there in Norfik from me down here in Suffik :wink2:
Perhaps you should suggest to your Gp that he also looks Lupus up on the internet!
Seriously though Sandra It is as well to educate yourself about the many and various aspects of this disease using sites such as this or the LupusUK site.
I made the mistake of reaching for my old(30 yrs) medical book and expected to die of renal failure within the next five years Things have changed enormously and I firmly expect to grow as old and cantankrous as the next person.
Arm yourself with knowledge, get to know how your particular lupus affects you, and find doctors you trust.
Oh......and visit us all here as often as you need.There will always be somebody who is experiencing or has experienced the same thing.
Good luck
Perhaps you should suggest to your Gp that he also looks Lupus up on the internet!
Seriously though Sandra It is as well to educate yourself about the many and various aspects of this disease using sites such as this or the LupusUK site.
I made the mistake of reaching for my old(30 yrs) medical book and expected to die of renal failure within the next five years
Things have changed enormously and I firmly expect to grow as old and cantankrous as the next person.Arm yourself with knowledge, get to know how your particular lupus affects you, and find doctors you trust.
Oh......and visit us all here as often as you need.There will always be somebody who is experiencing or has experienced the same thing.
Good luck
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