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Discussion Starter · #1 ·
Hi everyone,

My name is Beci, I have had health problems since being a child now at the age of 26 yrs old I am still fighting for a diagnosis!
After my health declined I was reffered to an Immunologist, after going to a follow up appointment last week, he advised that in his opinion I am suffering from Lupus and need to be seen. I am now waiting for an appointment with a professor I think in rheumotology??

my symptoms are:

Severe pain in my knee, elbow, hips and back
mouth ulcers, and sores round my nose
tiredness that people laugh at me!!
a feeling of being run over!!
feeling generally unwell, and very teary
I have hair loss, so have to wear wigs and things to cover it up
I also have stomach upsets?
very sensitive skin
The list really is endless.........

Does this sound like the symptoms of Lupus?

Thank you for reading this and I would verymuch appreciate your comments.

thanks Beci:worried:
 

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Hi Beci and welcome :)

Your symptoms could be quite typical for lupus. It is sometimes quite difficult to say though as lupus has so many weird and varied symptoms and also shares many with other diseases, especially other auto-immune diseases.

Your immunologist has done the right thing in referring you to a rheumatologist as they are the docs that specialise in auto-immune diseases.

I hope you soon find out what's going on, it sounds long overdue.

Katharine
 

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Hi Beci

Welcome to the Forum :) Im sorry you are having such a difficult time trying to establish what is causing your health problems. Its good that your Immunologist has referred you and he seems pretty certain (from what you wrote) that he believes its SLE. I presume he has taken blood tests. Do you know what these tests were and what the results were? If you get a copy of these results we can help a bit more to explain them.

You certainly have many of the symptoms typical of SLE. There are a couple of 'Sticky' posts pinned at the top of the Not Diagnosed Yet Forum which explain the classification criteria for SLE as well as some of the symptoms. Have a look at them. There is also one which is the St. Thomas list of 'alternative criteria' based on their clinical experiences with patients with Lupus. Here are some quick links to them to help you.

http://www.thelupussite.com/forum/showthread.php?t=33123

http://www.thelupussite.com/forum/showthread.php?t=63963

While you are waiting on your Rheumatology appointment make a full list of all your symtoms and also start keeping a daily diary of how you feel, what pain you are in, any skin problems, etc etc. This will be helpful at your appointment. If you have any skin problems take a photo of them in case they have gone away again by the time your appointment comes round.

Hopefully you are getting close to some real answers for all your problems. Im sorry you have suffered for so long but once you get a diagnosis you can start on treatment which should help to make you feel so much better.

If we can be of any help with your upcoming appointment just ask. Also if you have any other questions feel free to post. This is a fairly busy site and someone will always be along to try and answer your questions.

Take care and I look forward to getting to know you and hearing how you get on

Luv n stuff
Joan:rose:
you might like to look at and which explain some of the symptom
 

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Discussion Starter · #4 ·
thank you

Thank you for your help, the more I look into it I have almost every symptom I was admitted to hospital about 3 yrs ago and I had pericarditis that I believe can also be triggered from Lupus?

I am hoping to have a diagnosis soon my GP makes me feel like i'm making it up and its all in my head but it's really not!! I have had some bloods taken last Monday ANA and a list of others can I get my results soon or do I have to wait until I see the rheumotologist for them??

Sorry to be a pain its just so nice to have people to talk to about it and who doesn't think its all in my head!!

:)
 

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Hi again Beci

Where are you living? Getting access to blood results varies from place to place. In my case I can get copies of blood results by completing a form and submitting it to a particular section in my hospital each time I get bloods done. They post the result out to me then. Some people prefer not to get their blood results personally. Im a bit of a control freak though and I like to be as informed as I can! After all, it is my body and I like to know whats going on ;)

In other countries it is much easier to get copies of blood results - simply asking for them is enough.

You could try ringing the department who ordered the bloods (I presume it was Immunology?) and ask the secretary how you would get a copy sent to you.

Its a pity your GP isnt more supportive. Some of them need a good boot where the sun dont shine :(

Oh and yes you are right in that Lupus can cause pericarditis - inflammation of the sac around the heart.

Best of luck moving forward and ask any questions you like. Like you say - its great to talk to other who understand what you are going through.

Catch you soon
Joan:rose:
 

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Dear Beci, Welcome here. I have Lupus, so does my Daughter aged 17. We can both identify with how you feel. No-one here thinks you are making it up or that it is in your head. Many of us (probably all here) have been badly treated by Docs. at some stage whether just because they don't know or don't want to know.
x Lola

PS Lots of Luck.
 

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Hi Beci,
sorry you feeling rough at the moment.
Re bloods, my gp did not have access to my blood reuslts as they were done at the hospital. So what i did was as i am diabetic, when i went to see my diabetic consultant i asked him to print off al my results for me, then took them to my gp who phoned the rheumatology department.
The other thing that my gp did as i was stil very sick and had to wait ten weeks to return to rheumatologist was to write a letter to the rheumy asking for further comments following his examination and my test results.
You could asked your gp.
I wuld imagine if your tests show anything then your gp will need to start supporting you, if not i would get another one. He should knw i any case that symtoms of lupus or other connective tissue diseases can present themselve s before bloods show anthing.
I would keep pushing in everyway you can if you are not feeling well.
I saw my rheumatologist April 12th and despite being very unwell and my gp's frustration i still not been seen again as my rhematologist has left and no one has repaced him.
My g has spoken to a doc there who is trying to arrange extra clinics for urgent cases but the whole department is currently in crisis.
Anyway this is why i would keep pushing and don't allow then to ignore you, sometimes they have to be reminded that we are people and how sick we actually feel.
You already had really good advice in terms of what to do before your appointment. Th eonly other thing could add would be to give examples to your gp of how your health is affecting your ability to function. Things that you can't do anymore due to particular symtoms etc.

Good Luck with everything

Cassie :)
 

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Discussion Starter · #8 ·
Thank you, can anyone advise me if i can claim any benefits whilst not having an actual diagnosis, I have always worked but recently with the problems I have been having I have not worked now for just over 12 months. Some days I cannot manage looking after my daughter and my husband takes time from work to do the things I can't. I can not claim incapacity beneifit because I have not paid enought NI Cont due to going part time when I had my daughter??

:worried:
 

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Beci, you definitely can claim some benefits without a diagnosis, and get extra help with things too. I got a lot of help from the disability advisor at the CAB about what I could claim for. I've had severe health problems and increasing disability for three years now, and still no diagnosis, but I do get IB, income support and DLA. You might just need someone (like the CAB person) to help you through the forms and applications.
 

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Beci,

Have you heard of the changes in NI contributions for those women that have stayed at home to look after their children.

Lesley
 

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Discussion Starter · #11 ·
greenhaggis;517958 said:
Beci,

Have you heard of the changes in NI contributions for those women that have stayed at home to look after their children.

Lesley
Hi Lesley,

I have not heard of these changes but I will have a nosey on the internet now.

Thank you
Beci
:wink2:
 
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