New Here...not Sure Whats Wrong
Posted 08 December 2007 - 02:45 AM
Anyway been to a rheumatologist and all my bloodwork has been fine and he has pretty much given me the feeling that he thinks I'm a hypochondriac. Anyway that changed a bit yesterday, when at my visit, he told me I do have an autoimmune disease, vasculitis, based on results of a spot taken off my bottom. He wanted to start me on plaquenil but I asked if we could wait while I did a bit of research. My feeling is...what else is going on here...I have researched the vasculitis and in light of my other symptoms, think its just one part of the puzzle. But he seemed more than happy to label me with vasculitis and leave it at that.
Anyway, thanks so much for any comments or suggestions you can give, sincerely, Eileen
Posted 08 December 2007 - 07:54 AM
I would not leave it at that if it were me and I did not like his answers. You should always ask for a second opinion if you have concerns and you don't believe he/she is addressing your problems. I personally would ask my family doctor for another referral to a different Rheumatologist. You might even be able to locate one in your area with a good reputation, query arthritis/doctors online to see what you get and try to get a little research on him/her before you go to your doctor to ask, then you may even be a little prepared? Autoimmune diseases can be so complicated sometimes and having a good doctor you trust and can communicate with is extremely important. I hope you get some answers soon. Keep us updated.
Posted 08 December 2007 - 09:17 AM
I agree with Ramona. Get another opinion and try to find a doctor who is a scleroderma specialist. Believe it or not, your story is not uncommon. People are sent home in pain, sent to psychiatrists and so forth many times before getting a correct diagnosis. You have to be your own advocate. This website has a list of sclero specialists, listed state by state. To me, it would even be worth it to travel out of state to get a correct diagnosis, if you can afford it. After that, another doctor could probably follow a protocol set up by the specialist.
To me, it sounds like you have a lot of issues that need looking into.
Mary in Texas
Posted 08 December 2007 - 10:32 AM
Welcome to the forums. In my book we know our bodies better than any doctor. So if you feel there are still things going on, I would seek another opinion.
Hang in there.
Posted 08 December 2007 - 10:36 AM
The spot on your bum wasn't morphea was it? If you aren't having sever pain and swelling constantly then I would try to wait awhile before starting plaquenil if you can. You know your body and what you can tolerate.
Maybe, someone will respond about what point they were at when they decided to take Plaquenil. I just take alot of prescription Motrin and over the counter motrin when I am being bothered more than I am comfortable with. Sheryl
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)
Posted 10 December 2007 - 06:50 AM
I found that Plaquenil was a very good med. for my illness. I hope that what I have will never progress, so I am content with my diagnosis...however "wishy woshy" it may be! Please be sure to pay extra attention to any changes that you may notice with your body or health...these are the things that help the doctor to get an idea for what is really going on with you.
There is a great group of folks here for support, and the ISN has many articles with invaluable information.
Posted 10 December 2007 - 03:24 PM
Keep us posted!