[eestridge]

I have had mouth ulcers, kidney infections and random illnesses for the past year. Finally, my doctor ran a "blood serum" test and said I had very low C4 count and he's sending me to an immunologist and is thinking it is Lupus. I see the doctor in two weeks and am very worried. My doctor said he didn't know much about it and I'd have to talk to the immunologist. Can anyone help me? Worried sick...

Erika

 

[LolaLola]

Hello, I am sorry you are so worried. Sometimes Lupus can look very gloomy , particularly if you read old information. Treatments have improved dramatically in the last 5 years or so. The information on this site is reliable. One thing though, some of the people who come here are newly diagnosed or waiting for a diagnosis but quite a number of us are long term patients and tend to be more badly affected. (I am on Disability, that is how I have time to be here). There are many people with Lupus who can work and lead a very full life. I would not like you to get an unbalanced picture, as generally speaking the busier healthier Lupus patients do not have time to post.

Hope that makes sense. If you do turn out to have Lupus I would strongly advise you to find a more knowledgeable GP unless yours is keen to learn!

x Lola

 

[x_claire_x]

Hi Erika and welcome. I was diagnosed with MCTD last year and thats a mix of Lupus, scleroderma, myositis and raynauds.... I was terrified, especially when I looked up some pretty appalling data on the web. I instantly gave myself a death sentence and got in a right old state! I wish I had found this site then, the wonderful people on here have been living with Lupus for years and are very resourceful at getting round the various issues... they are friendly and informative and sometimes just a good ear when you need to vent or feel that you need to talk to somebody who has been there, done that.. Please don't worry the reality couldn't be more different to my wild imagination.. yes there are hard times but also alot of good times and some people have been diagnosed in the dark ages, that long ago...well almost!! So they have alot of info to give. I have felt loads better since being diagnosed and being treated, so just think of it as another step forward to feeling better. Feel free to post with any questions, you will get wonderful help... take care until then and stop worrying so much.
Claire X
ps..as Lola says so much of the internet info is way out of date. Alot has happened in the most recent years with treatments. Stick to this site for your info would be my advice.

 

[Katharine]

Hello Erika and welcome

When a doctor suddenly says, you might have "that" and leaves you to ponder that information, it can be, understandably, very worrying.

As the others have said, there is a lot of old and even incorrect information on the internet concerning lupus. For some people it can be more severe but for a vast majority the newer treatment methods will mean that life can go back to pretty much normal.

Maybe putting your mind to preparing your trip to the immunologist will help you relax a little. I don't think that it is good to OVER-read and inform yourself but, for example, taking a look around the information "stickies" at the top of the forums on this site, reading the info on the main site here, www.thelupussite.com and some other reputable hospital sites such as the St Thomas's trust, the Mayo clinic and so on might help inform you a little.

Try to clearly note down your list of syptoms (even those you think may not be related) and also keep a diary of what's going on with you. All these things help us be clearer when we see a doctor and give us something to refer to if we suddenly suffer from white coat syndorme in front of the doc.

AND bear in mind that lupus is a highly complex disease. Diagnosing it isn't easy and it can also "mimic" many others.

I hope that appointment goes well and if in the meantime you have any questions please don't hesitate

Katharine

 

[lazylegs]

:wavey: Erika,

Welcome to the site. The information here will give you an insight as to what Lupus is. Don't panic when you read the list of symptoms, if you do have Lupus you won't have them all. Each of us is unique in how Lupus affects us.

I hope your appointment with the immunologist won't be too far away. The waiting to know is always the hardest on us.

Take care,
Lazylegs

 

[eestridge]

Thank you all...

I want to thank you all for your kind words. You are all right, I have been reading everything and I'm overwhelmed. My first step is with my immunologist next Friday. What should I expect? My doctor won't give me any insight and acts like it is some big medical mystery. Also, I'm unsure what "very low C4 level" means? Any help would be appreciated as I'm gathering questions for the meeting. I guess I'm kind of relieved that all of my seemingly "unrelated" health problems finally may make some sense!

Thanks again to all of you...

Erika

 

[Maia]

Very low C4 means you are low in one of the series of complements in the blood. Low C4 levels can be due to a variety of reasons, and lupus is *one* of them. I will have low complement levels with a flare, and mine tend to run a little on the low end most of the time.

It will be a combination of your symptoms, signs, medical history, exam results, and additional blood tests (such as ANA & other auto-antibody blood tests) that will ultimately lead to your diagnosis. If you are diagnosed... the only thing that has really changed about you and your situation is that you will have a reason for your health issues... and you will soon be able to start appropriate treatment that should help a lot. That's the best way to think about it I think!

Here's a link that gives a pretty complete listing of causes of low c4:

http://www.ucsfhealth.org/adult/adam/data/003354.html

Some people are just genetically predisposed to low c4 too; but this in turn predisposes them to autoimmune illness too.

I hope you have a great appointment, but realize that it is very likely that you won't walk out with an answer. Most likely you'll walk out with quite a bit less blood and will come back for a return appointment to discuss them and hopefully get a diagnosis.

 

[x_claire_x]

C4 means complement level in your blood, that is only one element and it takes several symptoms and blood results for diagnosis. There is a criteria for diagnosis on this site that you can look up. write down all your questions, symptoms and concerns ready for your consultation... be as prepared as possible to get the most out of it.It may take time to be properly diagnosed so don't expect everything to happen in the one appointment. Let us know how you get on,
Claire X

 

[onetay]

hi and welcome to the site. Finding or thinking you have lupus is a scarey thing. You are seeing a doctor that will help you figure out what is going on with you and untill than there is nothing you can do. I know it is easy to say don't worry but that is really the best thing to do. Keep a journal of what is going on with you and of questions you have for the doctor it will help your appointment go better and faster for both of you. We are always here for anyone that needs us day or night. I hope you are feeling well and doing well.

 

[Christine UK]

Hello and a warm welcome...

I think most of us can understand how you feel it is scary when you dont know...

Best thing to remember is if it is Lupus at least you can be treated with the correct meds etc because you know what you are dealing with...do let us know how you get on..

 

[keebler]

Hi Erika,
Welcome to the forum. It is nice to meet you.
In your one post you stated.

My doctor said he didn't know much about it and I'd have to talk to the immunologist

.

That is probably why he isn't giving you to much information. He probably doesn't want to steer you wrong. My GP told me the same thing. I admire that he is willing to admit it. He is learning right along with me.

Take care,
Lyn