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Discussion Starter · #1 ·
Hello!
I am 22 years old, and have found a lifeline in this site.
Over the past two years I have had some extreme signs of SLE. A few doctors ruled it out without blood test, or telling me, they just talked to my husband as they had come to the conclusion I was emotionally unstable.
I made a point to get a real decision made, I just wanted someone to listen and for the first time in the last week, I've had some confirmation. They think it's quite bad and they have known this for almost two months. Now I'm going to have to pester them for the right medication.
Still strangely smiling though, what else can I do!?:)
 

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Hello there and welcome :)

It sounds like you have had a pretty tough time of it. Unfortunately your story is not uncommon and many here can understand what you have been through.

When you say "they" I presume you are being seen by a rheumatologist?

Hopefully now you will soon be put on medication and even if it will take a while to kick in, and perhaps other things may need to be added later, you should see a huge difference in life.

hope to hear more from you soon, bye for now :)

Katharine
 

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Hello and welcome

So glad you have found us. Join us in live chat sometime.

Dixy
 

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Hi and welcome to the lupus site, hope you find it helful, join in the chat room, take care


Lin xxxxxxxxxxxx
 

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Happy,
Hi and welcome to the site. It sounds to me like you are doing a little better now and I do hope that this is the case. It is hard when you know something is wrong and everyone else including the medical community thinks your crazy. I hope that the site is proving again to be of great help to you and to your family if they ever need it.

Be well and I hope that things are going better for you now.
 

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Hi and welcome to the board.
Good heavens, sounds like your doctors need to take a refresher course in patient care. Talking to your husband and not you?
The first rheumy I saw told me I had 5 years to live. This was back in 1988, so obviously he was wrong! He got fired soon after that.

It may sound like a broken record, but it is easiest to explain your symptoms if you keep a journal/log of what is happening. Take it to your doctor appt and insist on going thru it with your doctor. I'm afraid I would seriously consider kicking them to the curb and going on to find another. I have little patience for doctors who think they walk on water and keep their feet dry. grrrrrr
Hopefully your husband told them to talk to you as you were the one who is having health problems.

A diagnosis of lupus is made on meeting 4 of 11 critieria, with OR without lab work confirmation. I'm hoping that one of the moderators will be able to give you the link for the list of criteria. Check off the symptoms that apply to you, and take the list to the rheumy's for your next appt. Get a good explanation why you meet the criteria, and why they have held off on care you need.

I wish you good luck in dealing with your doctors. You are much nicer than I would be in your position.
Sally
 

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Hi HM

Welcome to the forums.

I am so sorry your journey thus far has been less than satisfactory, and has been mentioned, sadly this is not uncommon, recently diagnosed with SLE myself, it has taken 15 long months, and I have had some shocking treatment by various consultants along the way, at times the arrogance and rudeness was quite outstanding.

I know it is very hard when faced with consultants who think they are god, and even though at times I felt quite intimidated, I somehow clung on to my self belief, I know my body and it was telling me something is wrong, this was helped in the end by bloodwork that cannot lie!

I just kept going back to my wonderful GP, whose support and dedication to me as a patient has been breathtakingly brilliant, and I would say it is very important to have a GP in your corner. If I got nowhere with a consultant, we were referred to another dept, until finally I landed at my current Rheumatologist's door, and finally in front of the right consultant.

This wonderful site, I felt at home on immediately, and I hope over the coming months I will be able to offer some experience to people as has been offered to me.

Good luck.
 

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Hi Happy Medium,

I like your user name.:) Being positive is wonderful.

Here is some information that you might want to take a look at.

http://www.uklupus.co.uk/isitlupus.html

It part of this site. It has some great information for us all to read.

If you are not happy with your current doctor then you might want to switch. I go by the saying "don't burn your bridges, you may need to cross over them again."

Take care and let us know how you are doing.
:hug:
Lyn
 

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:welcome: to the site Happy Medium.

The only way you will get the care you need is to keep pushing for it. If the doctors you are working with now don't respond then you need to search for one that will. There is no reason for you to be left untreated.

The list of criteria Sally mentioned can be found at:

http://www.uklupus.co.uk/dxlupus.html

Take care,
Lazylegs
 

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Welcome to a great place on the net Happy Medium and I just love the user name.:lol::lol::lol:

Push forward until you get some answers. You know your body best.

Come join us in the chat room sometime.
 

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Discussion Starter · #11 ·
Thank you

Hello!!!
Thanks to all of you for the posts. I am definitely sure I am getting worse, (which is why I haven't been able to reply) and so is my G.P. she is great, but it's up to the rheumatology department, and I know how great they work;).
The real problem is having to tell the same story over and over as I have never seen the same one in the building let alone appointments.
Winging to one side, I am fully aware how hard this must be to pin down, that is why I would rather them be totally sure and me be painfully bedridden attempting to right a diary with badly arthritic fingers (you've got to laugh), than something worse happening.
For those who wandered about the rude rheum. doctor, my husband often said "That's all well and good but my wife is sitting over there!" It so funny I tried to disguise it with a cough and some how ended up choking.
More funny escapades of my that which is my soon :hehe:
 

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Hello, I'm new too so it seems a bit weird to say welcome since you joined first LOL!

Hope to see you around the boards some time!?!?!?!?

I had stupid doctors diagnose me with depression after spemding an hour with me. They woudl poke me, prode me and question me like I was a liar and then say tsk tsk she must be depressed when I would break down through shear mental and physical fatigue!

Good news is you have an answer now and you can go about getting some treatment for it!
 
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