Help! I have been so ill for the past 10 years since I had my daughter and after many years of seeing specialists and misdiagnoses, I finally said to heck with the public system (I am in Canada) and paid for a high-end private clinic my company uses. I found an amazing doctor who 1) believed me and 2) worked with me to come up with a plan of action. I had extrem fatigue (falling asleep in the car when I was in traffic--and the driver!) , flu-like episodic symptoms, night sweats/chills so bad am soaking wet and not able to sleep, brain fuzz, etc. that I was at a point that I was worried I was going to lose my job if I did not find a solution. I have ANA antibodies and with the presenting symptoms, he immediately felt Lupus was very likely and we made an appointment for a rheumy. Of course, the appointment was for 5 months away (welcome to the public system) and I knew that if something didn't happen before then, my job would have been history. We started treating it bcause if it wasn't I wouldn't respond. He started me on 50 mg of predinose to taper down each week by 5mg as low as I could go. After two days -- it was a MIRACLE!!! I was me again! The bad news is that I am on 45 mg. and felt terrible again at 40 mg. I know this is a high dose but was intended only as a stop gap.
So, I saw the rheumy today and he was ANGRY at ME for being on predisone. He basically said I could have lupus but he has not seen my presentation before, fatigue isn't one of the symptoms that diagnose lupus, ana antibodies also doesn't really mean anything and my exercise intolerance is a mystery. He doesn't understand why the predisone is working and I got the feeling that he neither believed me nor really gave a darn.
The only good thing that came from it is that he is sending me to the Lupus clinic who as he said deals with atypical lupus. I am trying to guard my optimism about finding a solution but feel like I have been kicked in the teeth...any advice would be helpful. thx.