So, rheumatoligist appointment today
Second one. Last appt he wanted more tests. Low positive lupus he said, but with the problems he was going to treat.
Today, he checks me for fibro. I’m not an idiot, he’s done the trigger points twice. Pain is not my biggest issue. It’s the legs feeling like jello, confusion, word garbage and balance. These are my main problems. Yes, I hurt, but I have for so long it’s not a big deal.
Twice I tested positive ANA for homogenous, low titer of 1:320 both times. Except t he first time I also tested 1:320 for scleroderma.
This time, tested a 5 on anti-dsdna test which shows in the equivocal phase.
Today, he tells me that he can’t confirm a diagnosis of lupus because my tests were normal. Says he’ll see me in an add needed basis and to see a neurologist.
I’m confused. My symptoms have gotten noticeably worse. Even my husband is worried about the balance and the weakness in arms and legs.
So frustrated.
Many people with fibro have those symptoms to. Seeing the neurologist is a good ideal and can rule out or confirm many things. Make sure the rheumy sends all the test results to the neurologist ahead of time. I move slowly from one position to another when I am having balance problems. I have also replaced all my glasses and plates with non breakable ones because I never no when the weakness in my hands will cause me to drop something. I hope you find answers soon.
Me too. I am so frustrated right now. He didn’t even listen to me today, just wanted to wash his hands it seemed. I’m not even wanting pain meds…so it’s not like I’m seeking. Low positive is still positive in my book. Especially twice
Thanks purplebutterfly…now it seems the wait will be longer to figure this out.
So my red face and neck?
I guess he must think I was in the sun.
Whatever.
I had to see 5 different rheumys over several years before I received a diagnoses. I also was sent to a neurologist. Because I have so many neurological symptoms I still see a neurologist. My rheumy is the one who wanted the lumbar puncture done but he had to speak with the neurologist to order it. It is a good idea that you are seeing a neuro. Medicine is a process of elimination, especially when diagnosing Lupus. There are several more tests that a neurologist can do to determine what is causing your symptoms. Hang in there, I've been there and I know it's a tough road when you don't know what is going on. Eventually you will.
Hi Reddog,
That’s just crazy!!!
I asked for a second opinion. Honestly didn’t care for him the first appointment.
Felt like he dismissed me yesterday. Didn’t even listen to me talking about my symptoms getting worse.
I will go to neurologist, this was mentioned 2 years ago when they tested me for MS ( just an MRI) but was never followed thru by my Dr and I didn’t push it.
I’m limited here, there are only 3 rheumys and they are all in the same building.
Not giving up. You diagnose me them you tell me that you can’t diagnose me? When the labs haven’t changed.
Thanks reddog, my hubby and I just refer to that dr as a quack now…
You should think about a doctor that looks at the whole person instead of just labs. 2 1/2 years after kidney biopsy confirmed lupus, I still have NEVER had ANA positive test results. 1% of patients are always negative, like me, but others that test differently depending on if you are in the middle of a flare.
Best of health.