Hi there! Yes it is a lot to deal with but I am learning to live with it. I have seen only one rheumy but I made an appt with a new one. I see her next week. They tested me for Lyme with the elise test and said negative but I have heard there are many false negatives on that test and a western blot should be done. As far as Lupus, my old rheumy told me my ana was negative and i will never change so it is not lupus. i have since learned that your ana can and does change so the next rheumy i see I am spending time in sun before I go and then I am demanding another ana. i will surely keep you posted and lol at cfs and a coke. We have to find the humor huh?? Take care sweety!
Hi dee
That's a long but very clear list of sx. What a load to deal with.
I'm with binx on this...find another specialist. But, forgive me if you've been down this route: have they ruled out lupus and lyme?
(Sounds like a cocktail, doesn;t it?! 'What's yours? 'Thanks, I'll have a CFS and coke please!' ;-)
bestest to you
sammxx
Yes my rheumy was at a University. LOL....but I am seeing another one in that office. I really have no choice because if I see one elsewhere then I will have to wait months to get in and I do not want to wait anymore...thanks for ur kind words
hi dawn,
i am so sorry to hear that you're now dealing with another symptom--the spots on your face--but i am even more sorry that you are still not getting any answers from your doctors. can your primary doctor refer you to another rheumy? are you anywhere near a university medical center?
i know what it's like to beat your head against the wall with doctors who dole out inaccurate information rather than just admit they don't know and refer you to someone who might be able to help. it is crazy-making and i hope you can somehow find another specialist who is willing to help you. don't settle for deadbeats like your rheumy & neurologist. don't give up.
best wishes and hugs to you,
binx
the pic of me is the newest saga...brown spots on face