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How can LUpus Patients Understanding & Support (LUPUS) help you better?
lupus-support1Administrator46 Voters
Its about time gps were trained to spot lupus sign's it took twenty years and so many different pills and tests before they agreed i had lupus sle ohh and one persistent gp
I agree with you! It is not only GPs, but even rheumatologists who have never seen or treated a lupus patient! This is about the training doctors receive! Dr Wallace, a prominent lupus specialist in the USA has noted that if lupus was a predominant "male" disease, it would have better funding, research and recognition!
You are not alone. Indeed, may patients report that a diagnosis has only come after decades of suffering and that doctors were more towards depression/anxiety than looking for lupus. Unless a doctor is actively thinking of lupus, it will not be diagnosed unless a patient has a malar rash, positive ANA and lupus nephritis. However, most lupus patients do not present in this classic way and many patients are ANA negative, while people with a positive ANA can be perfectly healthy and do not have lupus!
Thanks for your reply!
Be well!
Ros
I believe that if the gps were not so afraid of something that they don't specialize in and were trained more proficiently in the signs of autoimmune diseases it would save us all a lot of heartache and frustration as we figure out what we have!
Thank you for your response. I agree with you that doctors are not well trained in autoimmune diseases. In 1995, Dr Graham Hughes wrote, "Is it lupus? The St Thomas' Hospital 'Alternative Criteria'" which helps physicians look for signs of lupus. You can find this paper at the LuPUS Message Board. I have sent you details about LUpus Patients Understanding & Support (LUPUS).
Be well!
Ros
It's interesting just how many people, particularly medical professionals, have any knowledge of SLE, let alone how to treat it! My specialist nurse is a good 1 hours travel away and seems to be the only person with any knowledge of lupus and its varied and complex symptoms!
My own medical practice has several GPs and they seem to rely entirely on the knowledge of the specialists at the main hospitals for treatment. Also, being one the the 10% of males affected by the disease does not help matters for me especially as I am an older lupus sufferer at 58!
Hello Bakerman - You are right about the impoverished knowledge of SLE by many medical health professions. I can also understand this is made even more difficult for you since 90% are women. At the LuPUS Message Board, the majority are women but we do have men posting. I feel that we do not do enough to help men and therefore if you have any ideas let me know.
We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.
By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.
When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".
Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.
I look forward to talking with you more!
Sometimes we need to talk to people who understand and who are not family or friends.
With good wishes!
Ros
Thats true. I presented at A&E one night with pain in my spleen (I think). The response of one of the Dr's was to say that it cant be anything connected with Lupus as Lupus doesn't affect the spleen. Erm, hello, isn't the spleen where antibodies are made??? Unbelievable! Scary and not very reassuring. As a result of this I've decided to take a proactive approach with all Dr's and tell them what I think rather than wait for them to give their 'considered' opinion!
I am so sorry you had this experience and I wish I could say that this does not happen often, but it does. To my mind, the problem is not just the doctor does not know, they do not contact anyone who does know ie a lupus specialist. Even rheumatologists may not have treated lupus patients and therefore are not specialists in SLE which is what you need. While we do try to understand our bodies and lupus, we do need to be "cared" for by lupus specialists.
I have validated your registration at the LuPUS MB - so please use this in any way that will help you. If you can, introduce yourself too. I can always be contacted there using the Private Message system.
With good wishes,
Ros
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