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Discussion Starter · #1 ·
Hi there, I'm Charlotte and this website has freaked me out.
I went for blood tests last year and due to my tierdness/fatigue the doc thought i may be diabetic which was rather worrying but that all came back negative.
Due to a lot of lumber back pain I have had for the past few years and having chiropratic treatment i decided to head over to the doctors again and explain that I felt as though my actual bones hurt not the muscles. He did a few movement tests on me and decided to send me for blood test for Lupus, the first lot were inconclusive so i went back for another 8 tubes of blood which confirmed that actually I do have lupus. I have just been booked in to see a Rheumatologist at the beginning of March.

I am new to all of this and the things on this website have really scared me. Please can someone tell me what I am to expect when i see the Rheumatologist? Is it xrays, blood tests? I have no idea, literally just got back from the doctors and feeling rather numb by it all.
Hope to hear soon
Charlotte :worried:
 

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Hello Charlotte,

Welcome to the website. I'm sorry you have been feeling scared and worried and that the diagnoses is lupus.

I can say you are in the right place.

Your Rheumy as we call them should take blood and urine and examine you. Hopefully since you have already been diagnosed he/she will start you on meds to help you to feel better.

If they put you on plaquenil, a well known med for lupies(that is what we call us :) ) then it can take up to 6 months before it fully kicks in but you may feel better right after taking it.

If they put you on prednisone you will gain weight but should feel better right away.

There are many more meds out there that your doc could see that you need so don't be surprised if you end up with a drug store of meds after a while.

People,, loved ones and strangers seem to have a hard time understanding what we go through,, the pain, fatigue, good days, and bad days so don't get too frustrated when people look at you and think your faking it. Just come here and vent your frustrations,, we will totally understand :)

People with this illness these days live long lives with the new meds they have out now so I won't worry too much.
I know right before i was diagnosed i thought i was dying,, that's how bad i felt, just awful inside and out.

Well I'm still here and so are you and we will chat online soon one day i hope to discuss your feelings and all else.

Just remember,, this website is one of the best places you can be right now and don't worry.

((((((((charlotte))))))))
 

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Hi there Kittycat,

I don't have much time to answer just now, but PLEASE PLEASE don't be scared by this website. You will find that it is a wonderful source of knowledge, support and advice.

However, what you need to keep in mind is that the people who post here the most are those who, like you,

1) have just been diagnosed and haven't really got any treatment going yet. 2) people who are not yet diagnosed and are looking for answers.
3) the rarer, more severely affected people.

With the treatment options available nowadays many lupus sufferers are able to lead perfectly normal lives and are so caught up in them that they don't have a lot of time to come and say hi to us here on the boards :lol:

hope to speak again soon and that next time I'll have the time to answer properly :)

:hug: to you

Katharine
 

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Dear Charlotte,
You will soon learn how to manage your condition well.There is plenty of experienced help here.
I am a long term patient and my Daughter is recently diagnosed.
I hope you are not apprehensive about your appointment.
x Lola
 

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Hi Charlotte

Please dont be too worried at this stage. Who was it that said you had Lupus? Was it your GP? Many times GP's are wrong about this as they are not specialists in autoimmune diseases and can mistakenly interpret blood results. There are no definitive blood tests for Lupus. Diagnosis is most commonly made by a Rheumatologist and involves a combination of blood tests and presenting symptoms. Have a look at the criteria list pinned at the top of the Not Diagnosed Yet Forum and see if any of them ring any bells. Its likely from what you say that your ANA (anti nuclear antibody) test was positive but this can be positive for lots of reasons other than Lupus.

At your first appointment you can expect the Rheumatologist to take a full medical history (and also family medical history is important too). For example is there anyone in your family with an autoimmune disease like Lupus, Rheumatoid Arthritis, etc? They will also ask you about symptoms you have been having so its a good idea to prepare yourself now and write down symptoms you have been experiencing over the past year or since whenever you remember starting to feel unwell. Dont leave anything out.

They will also most likely take a load of blood tests again, do a urine and BP test and generally thats about it. The only time I have been sent for Xrays is if I was particularly complaining about something like chest/lung pain. The first consultation usually takes a minimum of an hour to an hour and a half in my experience. Oh yes, they will probably weigh you as well.

Dont expect any answers on your first appointment. Most specialists take a very conservative approach and down play things until they have run their own gauntlet of tests. They will most likely make you a follow up appointment where they can go through the results with you.

If you are experiencing particularly troubling symptoms you might ask them about some form of symptom relief while you are waiting on your second appointment.

If it does turn out to be Lupus, please remember that Lupus affects everyone differently. No two people are alike. Some people run a very mild course with their disease with the minimum of medications and lifestyle adjustments. Others of course arent so lucky but there are a range of treatment options out there.

The good thing is that you found this site as early as you did. There is a wealth of advice and support here so dont hesitate to ask any questions in preparation for your appointment or afterwards.

Take care for now
Joan:rose:
 

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Discussion Starter · #6 ·
Hi there
Thanks for your advice. The only symptoms I have is a bad back in the lumber area, bad knee joints and tiredness, do i really have lupus? I have been reading through other new peoples comments and I am not convinced I have this and it is just me being tired from work and back problems. I am in pain with my back every day but still just get on with it and have managed to live with it. It is hard to get out of bed but once I am up and about in the morning I am fine until I sit down and relaz at night. I am not wanting to take medication everyday, if I have too as it isn't natural. What symptoms do you have or do you know anyone else that just has a couple of symptoms. Sorry for all the questions just still in sock and completely confuessed. Thanks and hear soon Charlotte x

sadieone;495340 said:
Hello Charlotte,

Welcome to the website. I'm sorry you have been feeling scared and worried and that the diagnoses is lupus.

I can say you are in the right place.

Your Rheumy as we call them should take blood and urine and examine you. Hopefully since you have already been diagnosed he/she will start you on meds to help you to feel better.

If they put you on plaquenil, a well known med for lupies(that is what we call us :) ) then it can take up to 6 months before it fully kicks in but you may feel better right after taking it.

If they put you on prednisone you will gain weight but should feel better right away.

There are many more meds out there that your doc could see that you need so don't be surprised if you end up with a drug store of meds after a while.

People,, loved ones and strangers seem to have a hard time understanding what we go through,, the pain, fatigue, good days, and bad days so don't get too frustrated when people look at you and think your faking it. Just come here and vent your frustrations,, we will totally understand :)

People with this illness these days live long lives with the new meds they have out now so I won't worry too much.
I know right before i was diagnosed i thought i was dying,, that's how bad i felt, just awful inside and out.

Well I'm still here and so are you and we will chat online soon one day i hope to discuss your feelings and all else.

Just remember,, this website is one of the best places you can be right now and don't worry.

((((((((charlotte))))))))
 

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Discussion Starter · #7 ·
LolaLola;495371 said:
Dear Charlotte,
You will soon learn how to manage your condition well.There is plenty of experienced help here.
I am a long term patient and my Daughter is recently diagnosed.
I hope you are not apprehensive about your appointment.
x Lola
Hi, thanks for your comments, what are your or your daughter's symptoms as I only seem to have tiredness/fatigue and back and joint ache. I am really confuessed about all of this and I have somehow convinced myself that I haven't got this and the doctors have it wrong? I suppose when I see the specialist he or she will be able to shed more light. Look forward to hearing from you. Charlote
 

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Discussion Starter · #8 ·
Joandublin;495379 said:
Hi Charlotte

Please dont be too worried at this stage. Who was it that said you had Lupus? Was it your GP? Many times GP's are wrong about this as they are not specialists in autoimmune diseases and can mistakenly interpret blood results. There are no definitive blood tests for Lupus. Diagnosis is most commonly made by a Rheumatologist and involves a combination of blood tests and presenting symptoms. Have a look at the criteria list pinned at the top of the Not Diagnosed Yet Forum and see if any of them ring any bells. Its likely from what you say that your ANA (anti nuclear antibody) test was positive but this can be positive for lots of reasons other than Lupus.

At your first appointment you can expect the Rheumatologist to take a full medical history (and also family medical history is important too). For example is there anyone in your family with an autoimmune disease like Lupus, Rheumatoid Arthritis, etc? They will also ask you about symptoms you have been having so its a good idea to prepare yourself now and write down symptoms you have been experiencing over the past year or since whenever you remember starting to feel unwell. Dont leave anything out.

They will also most likely take a load of blood tests again, do a urine and BP test and generally thats about it. The only time I have been sent for Xrays is if I was particularly complaining about something like chest/lung pain. The first consultation usually takes a minimum of an hour to an hour and a half in my experience. Oh yes, they will probably weigh you as well.

Dont expect any answers on your first appointment. Most specialists take a very conservative approach and down play things until they have run their own gauntlet of tests. They will most likely make you a follow up appointment where they can go through the results with you.

If you are experiencing particularly troubling symptoms you might ask them about some form of symptom relief while you are waiting on your second appointment.

If it does turn out to be Lupus, please remember that Lupus affects everyone differently. No two people are alike. Some people run a very mild course with their disease with the minimum of medications and lifestyle adjustments. Others of course arent so lucky but there are a range of treatment options out there.

The good thing is that you found this site as early as you did. There is a wealth of advice and support here so dont hesitate to ask any questions in preparation for your appointment or afterwards.

Take care for now
Joan:rose:
It was the heamatologist at the hospital who confirmed it in writing to my GP about having Lupus. No one in my family has an autoimune disease but my cat does have a rare one and also takes predisalone every day, poor love. So looks as though my cat and I are in the same boat. I am convinced I haven't got it and the hospital and GP have got it all wrong. I will have to wait and see until the beginning or March. Thanks for your words and maybe hear from you soon. Charlotte
 

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Welcome!! It can be scary to be diagnosed with something and have to learn all about it, but sometimes its also good to finally have an answer to why your feeling so bad and finally be pointed in the right direction to get help!!:)
I have been diagnosed for 2 years and always visited this site for personal stories and connections to others that fealt my pain :) Its nice to know that your not the only one!!:) I also took out every book from the library on lupus, auto immune diseases and fibromyalgia (very common with lupus) it help to get the information so that when I did go to the doctors I asked the questions I needed answered.:)
Just remember your not alone and allow this site to give you information but not diagnose you (let your doctor do that):yes: Ask all the questions you have, to this site and the doctor!! I always keep a notebook around and right down any new symptoms and when I go to the doctor I bring it with me to ,make sure that my foggy thinking doesn't sabotage the visit:lol: :lol:
I pray that you will get relief soon and the answers that you need!!
The only stupid question is the one not asked!!!:bigsmile: Remember that we are not here to judge or lecture you but to offer support and kind help from those who may know the answer.:) Don't be scared you are surronded by people who care and understand literally your pain and frustration and worry!!:hug:
Take care!!
 

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Hi Charlotte,

Just wanted to say hi & welcome you to the site. I know how scary it can feel when you are first diagnosed - I was in your shoes just over 18 months ago. If it wasn't for the information and fantastic members here I don't know how I would've coped.

There is always someone who can relate to how or feeling or just offer a friendly word. We have a giggle here sometimes too :hehe:

One of the best tips I learned here which Laura also mentioned, was to keep a diary or log of symptoms, meds and appointments. It can all be a bit overwhelming when trying to remember things when you see the Rheumatologist so it's handy to have it written down.

I look forward to getting to know you.

Hugz,

Pam xxx
 

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Dear Charlotte, we have awful fatigue, mouth and nose ulcers, rashes, bad joint pain and problems with memory and coordination etc. Also I am very photosensitive. The sun lays me out completely.
We are quite badly affected though, it is true many lupies look great, go to work etc. Immi(my Daughter) and I are not among them although I am hoping her health will improve.

You may not have all these symptoms but you are in pain and if it is Lupus you will need proper monitoring.Please don't feel that you aren't deserving of help because you are not at Death's Door! It took a long time for me to be diagnosed and I do have some other conditions as well so I am not a good comparison for you.
x Lola
 
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