View Full Version : Please help me figure this out (long)

02-13-2004, 12:39 AM
Hi, I just found this site thanks to a nurse practioner friend of mine. Originally 3 yrs ago I got sick and couldnt seem to get better after 2 rounds of antibiotics I finally developed pnemonia. Shortly after that I developed what we thought was seizures of some sort. I was having this tingling burning sensation in the back of my head at the base then I would just fog out. I lost all my energy and did not get it back. I had an episode at my chiro who sent me to er they then referred me the next day to neurologist. Originally he dx'd me with lupus sle. Then he sent me on my way to a family doctor who decided that since the second test was neg that it fibromyalgia. So Ihave been being treated for those symptoms ever since. Problem is I have frequent and severe oral and nasal ulcers as well as frequent and severe thrush. I have alot of pain in joints mainly back, shoulders, elbows, knees and feet. I have yet to be able to get the pain undercontrol. I also suffer from frequent migraines. They did a sleep study and they know that I have very bad PLMD and RLS. I am currently in some sort of flare major oral ulcers and very painful thrush as well as the all over joint pain and brain fog. My NP friend says my symptoms sound more like lupus and he thinks they should explore that more as I have a consistently elevated sed rate and lupus anticoagulant. I dont know which it is fibro or lupus all I know is I am not getting any better and I need help. Any thoughts?

carla bates
02-14-2004, 02:02 AM
You could sit here for hours, you know the chicken or the egg. You need to get help if you are not getting any better.
It is your body and your pain and you need to find a GOOD dr. that can help you. Over the years I have only come across two that would admit they didn't know something. They, believe me are few and far between.
Sometimes you have to be persistant and especially if you are young. Many times a GP will not admit he isn't a specialist and then sometimes you have problems.
If I had a nickle for ever Dr. who didn't take me serious or thought I wanted pain meds, I would be rich.
You are the only one who can get to the bottom of it.
Good luck and let me know how things go for you.

03-07-2004, 08:23 AM
It sounds like both FM and SLE. I, as do many of us, suffer from both symptoms. I have FM, SLE, IBS, TMJ, and Raynaud's.
I agree with you nurse practitioner friend, ask your doctor's to test you further for LUPUS and Fibromyalgia.
Let us know how it goes. Remember, none of your symptoms are in your head...they are very real. Insist that your doctors take them seriously, run tests and provide appropriate treatments.
Keep us informed as to how things go for you!
Best of Luck

03-27-2004, 09:47 PM
If you think you have Lupus, please SEE A RHUEMATOLIGIST! They specialize in diagnosing lupus. To often pre-diagnosed lupus patients wait for their doctors to send them to a specialist. Sometimes because they don't know which specialist to go to.

You have to be proactive and do what you know is best for your body.

I wish you the best, the diagnosis stage is a hard one. Hang in there and stay strong and let us know if you do decide to see a rhuematologist and how it goes. Also, take the report from the first doctor who suspected that you have lupus to the rhuematologist.