[freakyschizogirl]

My doc says i have Lupus and my Rheumie says maybe...he doesnt want to give me a proper diagnosis incase he is wrong obviously. Tho a friend's mother has the same Rheumie as me and she says that he dabbled for years saying yes and no but she is now in a wheelchair and definately has lupus. I dont have any severe symptoms but enough for my GP obviously to say i have lupus.

Mostly my symptoms include Fatigue, headaches and migrane...weight gain at the moment, a general and never ending feeling of malaise, anaemia, bouts of depression, dizziness lately and general weakness.

So confused...is the Rheumie just being cautious?? Or is my GP wrong?

 

[Katharine]

Hi there,

That is a relaly diffciult question to answer!

On the whole GPs are not particularly good at diagnosing lupus or other auto-immune diseases as they lack the specialist expertise necessary to diagnosis. Having said that mine suspected lupus long before anyone else (He does however lack the expertise to treat it).

Rheumatologists do tend to be cautious when diagnosing and one of the reasons is that it may be more difficutl to get things like health insurance with a lupus diagnosis.

The essential thing is whether you are being taken seriously by the rheumy, whether you feel comfortable with him/her and whether you are being effectively treated. Some people are not "quite" diagnosed but their rheumies know something auto-immune is going on - most likely lupus - and they are being treated with all the meds that can help them.

If you do feel very uncomfortable with the rheumy then it may be worthwhile looking for a second opinion from another rheumy. Getting a referral shouldn't be a problem as your GP should be behind you with that.

Having a good rheumatologist is essential. Having a wonderful GP is too, but for most of us the rheumy becomes our primary carer as far as lupus goes with the GP working hand in hand and being there for all the inbetween things.

Katharine

 

[halfpintfl]

Hi there,you certainly don't sound very happy with your doc's. I cannot imagine a GP that knows enough about autoimmune to say that you may have it. Besides, the only one that can dx you is a Rheumy. The reason they are so cautious about putting the "label" on you is that Lupus ic called the disease of 1,000 faces, for a good reason, that how many diseases it imitates. Now, thinking of things that way, can you see how hard it would be to dx you ? Lupus is dx by history, symptoms, bloods, and his observation of you during your appt's. Write all your symptoms down and take them with you to every appt, and keep the list up to date. If you have the slightest uneasy feeling about this Rheumy, ask for a referral to another on. But get on that you feel confident with. Keep posting.:wink2: ​

 

[Lily]

Hi there,

It's hard reaching a diagnosis with something like Lupus and often takes time and some deliberation by specialists. It's not so much that your GP is wrong perhaps but if the Rheumy says maybe then it means he's not 100% sure :hehe: and doesnt have enough evidence right now. They are often more conservative in handing out a diagnosis especially with a lifelong illness that will affect insurance and lots of other things. So sometimes not having a firm label can be handy.

I guess the main thing you should be concerned about is your Rheumy treating your symptoms? All the connective tissue diseases are treated with similar drugs, so whether you have Lupus or another associated disease it should be treated. Are you on any meds?

love
Lily