My wife received her diagnosis in December last year after many years of illness and searching for a diagnosis and treatment. Things are just stabilising now and thought we would share our experiences and tips to help all those who are still in the battle.
1. Stay away from doctors who dont understand or even some who dont believe in lupus. They can do you much harm and at the very best frustrate and delay treatment.
We once had a senior consultant in all sincerity say that the treatment for auto immune conditions is to increase anti depressants. Unfortunately in our experience there are a lot of them about.
2. Go to a lupus specialist even if you have to travel - its worth it. This is all they do so they will look past negative ANA / dsdna to look at you and all of the tests and all of the symptoms.
3. Dont give up. Sometimes it feels like the world is against you. Persist and you will get there.
4. Do your research. Have a view on what you have and why it will give the doctors something to disprove.
5. Try and bring family and friends with you - they can be great support
6. This forum and the people who post on it are brilliant. If you got it then the chances are someone has had it before and knows how to deal with it. So post your problem / question and you will discover you had a hidden army on your side and with you.
If you cant post search previous posts - they nearly always turn up gold.
and lastly just to thank all from pooh bear (the wife) and me for all your advice, help and support for all who have posted in response to my problems and questions. You have helped us both so much.