Hello Vicky,
It is clear that something is going on for you. You know your body and that's what you have to keep in mind!
It sounds like your GP is behind you and that is excellent as his support is invaluable in trying to find out what is going on.
Unfortunately auto-immune diseases are very complex and can be hard to diagnose. Although a rheumatologist is definitely the right doc to see, not all are experienced in auto-immune diseases.
Having negative ANA results will always be difficult for diagnosis as it does clinch the diagnosis for many docs. However there are people who have been diagnosed without ever having had positive ANA but, in fact, only about 5% of lupus patients never present positive ANA. In that case a skin biospy can be helpful in obtaining a diagnosis so it can be useful to see a dermatologist.
All symptoms you have should be well documented and any rashes or "visible" signs that you have should be photographed and taken with you to appointments as they have a nasty habt of disappearing on the wrong day.
A very experienced lupus doctor will sometimes make a diagnosis of lupus or maybe Undifferentiated Connective Tissue Disease (which would be treated basically the same way) without positive ANA.
Take a look at the alternative criteria for lupus diagnosis in the "not yet diagnosed section" and see if anything there seems to fit for you.
The only other things is that you mustn't give up. You just have to keep plodding along to the docs until you find out what is going on.
It may or may not be lupus (for example sjorgens fits many of your symptoms) but diagnosis will still be hard if it is auto-immune.
There is also a "find a doctor" section here on the boards which can help you to find a specialist lupus doctor in your area.
And as for the comment about not common in white women.....well, it may be slightly more prevalent in some areas and origins but a lot of us are white, indeed some are very white as we studiously avoid the sun :lol:
Keep us posted,
Katharine
It is clear that something is going on for you. You know your body and that's what you have to keep in mind!
It sounds like your GP is behind you and that is excellent as his support is invaluable in trying to find out what is going on.
Unfortunately auto-immune diseases are very complex and can be hard to diagnose. Although a rheumatologist is definitely the right doc to see, not all are experienced in auto-immune diseases.
Having negative ANA results will always be difficult for diagnosis as it does clinch the diagnosis for many docs. However there are people who have been diagnosed without ever having had positive ANA but, in fact, only about 5% of lupus patients never present positive ANA. In that case a skin biospy can be helpful in obtaining a diagnosis so it can be useful to see a dermatologist.
All symptoms you have should be well documented and any rashes or "visible" signs that you have should be photographed and taken with you to appointments as they have a nasty habt of disappearing on the wrong day.
A very experienced lupus doctor will sometimes make a diagnosis of lupus or maybe Undifferentiated Connective Tissue Disease (which would be treated basically the same way) without positive ANA.
Take a look at the alternative criteria for lupus diagnosis in the "not yet diagnosed section" and see if anything there seems to fit for you.
The only other things is that you mustn't give up. You just have to keep plodding along to the docs until you find out what is going on.
It may or may not be lupus (for example sjorgens fits many of your symptoms) but diagnosis will still be hard if it is auto-immune.
There is also a "find a doctor" section here on the boards which can help you to find a specialist lupus doctor in your area.
And as for the comment about not common in white women.....well, it may be slightly more prevalent in some areas and origins but a lot of us are white, indeed some are very white as we studiously avoid the sun :lol:
Keep us posted,
Katharine
