Hi Tracey,
I'm sorry to hear that you're having so much trouble accessing treatment. Some rheumies, when they feel they can't give a firm diagnosis of "lupus" will diagnose a patient with Undifferentiated Connective Tissue Disease (UCTD). It is a way of getting around the firm diagnosis problem and getting the patient on treatment (the same treatment as for lupus). It is also better insurance-wise than having a firm lupus label.
Your GP is wrong that a consultant will not look beyond fibromyalgia. An experienced auto-immune specialist will know that about 30% of lupus patients also have fribromyalgia and he will also be able to look at the whole picture even if your bloods are still negative.
I think the key here is really finding a way to get to a true auto-immune specialist. You can ask for recommendations here in the 'find a lupus' doctor section. Even if you don't have someone on your doorstep it is definitely worth traveling a little further.
Katharine
I'm sorry to hear that you're having so much trouble accessing treatment. Some rheumies, when they feel they can't give a firm diagnosis of "lupus" will diagnose a patient with Undifferentiated Connective Tissue Disease (UCTD). It is a way of getting around the firm diagnosis problem and getting the patient on treatment (the same treatment as for lupus). It is also better insurance-wise than having a firm lupus label.
Your GP is wrong that a consultant will not look beyond fibromyalgia. An experienced auto-immune specialist will know that about 30% of lupus patients also have fribromyalgia and he will also be able to look at the whole picture even if your bloods are still negative.
I think the key here is really finding a way to get to a true auto-immune specialist. You can ask for recommendations here in the 'find a lupus' doctor section. Even if you don't have someone on your doorstep it is definitely worth traveling a little further.
Katharine
