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Hey My name is Laurie I am still waiting after 10 years for a DX they think it is most likely LUPUS . I have the rash on my face and 97 % of all the other symptoms . I am new to all this computer stuff so I hope this is how it works .
I am just tired of not being able to talk to anyone else who understands the things this sickness throughs at you . I hope to meet some new friends and get some answers from all of this . So I guess I will talk to you all later.


Laurie
 

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Welcome to the forum Laurie ! :)

I am sorry what brings you here though.

I wonder why there is such a delay in diagnosis if you have so many symptoms. Sometimes this happens because there is no matching bloodwork but a skin biopsy can be very useful even when taken from unaffected areas. There are only four lupus specific symptoms and skin is one.
Unfortunately other symptoms resemble those of many other diseases and diagnosis often needs an expert experienced evaluation. Some of the other diseases often accompany lupus so there can be confusion that way, others aren't tested for and elimination of other possible causes is important

Sometimes it happens because doctors are ignorant - many rheumatologists have no experience with lupus many have complete misconceptions. I even heard that a doctor speaking at a lupus group said it couldn't be lupus if the skin wasn't affected.

Being ill is isolating whatever the cause and having a relatively unknown disease gets very lonely.
I hope we can help you to get some answers - there's a wealth of information, advice and understanding here, so just ask away. It could be helpful to know what your symptoms are and what testing has been done

Bye for now :)
Clare
 

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Hello Laurie and welcome :)

I'm sorry to hear that you have been having such a hard time getting a diagnosis. I really hope that you'll get some answers soon.

I presume that you are being followed by a rheumatologist. Have you been started on any treatment at all over the years?

I don't have much else to add, I think Clare said it all ;)

Hope to hear some good news diagnosis wise from you soon,
Katharine
 

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Hello Laurie

:welcome: to the lupus site. I am sure you will find what you are looking for here, friends and people who understand what you are going thru.

I have found this site so useful and the people great, it does make a real difference when you can talk to someone who knows exactly what you are going thru instead of explaining your probs to people who don't have lupus but say 'yeah i know what you are going thru' that totally boils my blood.

As Clare mentioned a skin biopsy can diagnose lupus, thats how i was diagnosed. I think you could do with seeing some new doctors if you have 97% of the symptoms but yet no diagnosis, if it is lupus you really need to be on some medication to help you.

Good luck :luck: at getting diagnosed and i hope you find this place as great as i do.

Take care :hug: Jo :hug:
 

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Discussion Starter #5
THANK YOU
for all your welcome's

I realy do think this will be good to talk to everyone. I already feel like people understand what I have been going through here. Well I agree you must have a good Dr and believe me I have gone through them . I think I finally found one who cares. I started getting sick in 2000 but at that time they only DX me with Fibromyalgia . Since then it has just gone down hill.
I slowly had to stop playing with my kids and to do housework is a joke.
My kids realy miss how things used to be . We still do things just differently.
But in 2004 I realy went down hill I had to have a hystorectomy due to cervical caancer, at the same time they took everything because infflamation
had taken it all over . Then I got a Dx of IC of the bladder due to infflamation.
That same year I lost all my side vision I can only see straight forward. Infflamation then attacted my stomach and bowel . I have a Rhum, Nuro, Gastro, Primary, vision, ENT, Dr. They have ran every test and done several surgeries . Ihave been tested for Lupus , MS , Lyme , But it wasn't till recently when this stupid rash on my face that they started getting serious . My RHUM thinks I have ANA Neg Lupus we just sent in a skin Biopsy and did an EMG . the EMG Dr said I definately have nurve dammage now and he thinks it is something Autoimmune and that my RHUM will figure it out . And yes I have been on Prednisone and Placqunill at different times . I am on a whole list of meds now but not thoes he wants a DX before we do that treatment again. I hope they figure it out soon because I have no Quality of life right now I go from the bed to the bathroom and thats it . If I go outside in the Sun I feel to sick like I am alergic to it.

Thank You for all the support

Laurie C
 

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poor you

Hello Lauriec, Youre really having a bad time of it.. wish I could wave a magic wand..theres people out here who have some understanding of the frustrations of what youre going through..I care if that helps...Whenever I get really down and feel like s*** I say to myself "this too will pass" Take care and have a hug.
 

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Hi there and welcome to the site.

It is a great place to be and many friendly people.

I hope that this biopsy sheds some light and that way you can start back up on the treatment.

When is your next follow up appointment?
 

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Discussion Starter #8
Hi

I don't go back for a few more weeks. But I think I will have to go back sooner to get another shot in my sholder I keep getting Bursitius there and in my knee . I don't think I spelt that right . Oh well, does any one else get that too?


Laurie
 

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Welcome Laurie,

Nice to meet you! I know this is a difficult time for you. I hope this site can ease your burden, and help answer any questions you may have..

We laugh together here and cry together here too! This site has a wonderful group of people that help one another cope with the disease.

Best Wishes, as you proceed with your diagnosis and getting the right meds you need to begin to feel better.

Yes, bursitis can be a problem with our joints..Inflammation, in the joints in general is an issue for us lupies.
:welcome:

Sandy
 

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Hi Laurie,

Welcome to the site. I am sorry to hear that you are having such a tough time getting diagnosed. Hopefully with all the tests you have had you will finally get a final diagnosis.

I hope to see you in the chat room sometime.

Take care,
Lazylegs
 

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Hello Laurie,
I suffer badly in the sun too. Are you using sun block,long sleeves etc.?
It took a long time for my bloods to turn positive but eventually when I got to the right Consultant he started treating me straight away.
x Lola
 

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Discussion Starter #12
Hi Everyone ,


No I have not tried to use sun block But I will now I did not know so much about the sun till coming to this site. Well I got the Biopsy back and no sign of Lupus there just infflamation But he wants to get another one from a spot that is more brokeout I will let you all know how it goes.


Lots of Love
Laurie
 
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