View Full Version : Some advice, please :)

04-27-2013, 02:10 AM
Hi everyone,

I've just joined this forum and am hoping you may be able to offer me some advice. I have an appointment with a Rheumatologist on the 8th May and I want to make sure I'm prepared. I'll be taking in results from scans and blood tests, but I'm not sure if there's anything else I should be taking as I have not been before.
Here's a little bit of my history:
November last year I started to get really bad lower back pain and shooting pain down my left leg (sciatica). Originally it was thought that one of the discs in my back was pushing on a nerve. I had months of physiotherapy which didn't help and a cat scan that didn't show a whole lot. After seeing no improvement and after copious amounts of pain killers that didn't help, I saw another doctor who recommended several different blood tests (including ANA) and an appointment with a specialist. My ANA came back positive (with a speckled pattern) and further tests showed a positive Sm B and RNP C which could possibly mean SLE or MCTD. I have also had an MRI done on my lumbar spine which has shown that I have disc degeneration. I'm only 28 so I would think I'm a little young for this to be happening.
After the positive blood results I've been referred to a Rheumatologist, but of course have had to wait so long just for an appointment. In the mean time had done a bit of research on Lupus and discovered I have quite a few of the symptoms (and have had throughout my whole life) including:
Rashes (red scaly & on the arms, back & tummy - but not on the face)
Fatigue (can be really really bad)
Hold/Cold flushes
Unexplained rapid tooth decay & beginnings of gum disease
Seem to get sick all the time
Headaches (lots and can be extreme - have had scans and found nothing)

I'm guessing the Rheumatologist will ask me a bunch of questions as well, but maybe I should write a list of things that I've experienced that are related?

Thank you all for your input, it will be much appreciated :)


04-27-2013, 07:00 AM
Hi Lauren! Welcome to the WHL family. This is a great question

I found it helpful to write a 1 PAGE overview of my history and a list of all of my labs that have been "out if range" (so two different pages). Do NOT give these papers to the nurse to throw in the chart. Give then directly to the Dr. when he/she comes in to see you. This makes them take a couple of minutes to remember who you are and it gives them a breakdown of all of the "odd" tests you have had. Since getting a Lupus diagnosis isn't easy and you don't have to have all the symptoms at once (they can be cumulative) it can give them a quick idea of what, if any, test results may fit into the picture. It really did help me when I finally started doing this. I know it helped many others also.

i hope your appointment goes well on the 8th. Please keep us posted and I hope you feel better!

04-28-2013, 06:29 AM
Thanks heaps for that:)
Will let you know how I go


05-07-2013, 12:49 AM
I think taking all that you have available to you is great. I always take a notepad to have a list of discussion points and room for notes from their answers. I think first appointments are the hardest. There are so many questions and unknowns. And be prepared for not having a clear answer right away. If you can take someone with you as we'll I recommend that as we sometimes forget something to ask or miss something they say because are thoughts are all over the place!
Good luck with your appointment Wednesday and let us know!

05-07-2013, 07:14 AM
Thanks for that :)
My partner will be coming to the appointment with me as I am very VERY nervous :(

Thanks again


05-10-2013, 03:51 AM
Well after my appointment I still don't really know whats wrong with me :(
The doctor said he wasn't ready to put me in the "Lupus" box yet, or any other "box" for that matter lol
He has started me on Plaquenil and is hoping to see an improvement in a few months time.
Just sick and tired (literally lol) of not knowing. It's already been 7 months, I would've thought they should be able to figure it out in that amount of time.
Just wondering how long everyone else has waited for their diagnosis????
Anyways, rant over, thanks for listening


05-10-2013, 04:09 AM
Hi there , I know how you must be feeling as it took the doctors , not months but years to diagnose me and when they finally did it was a huge relief! At least then I knew what was wrong with me and they also started me on plaquenil and anti inflam and it helped for a while but then every time I got too stressed or worried I would have a flare up ! Now I am at a point where the lupus has made me go a bit looney! I was told by my lupus specialist that sometimes lupus can make a person psychotic and that's where I am right now!

what are your main symptoms if I may ask! sorry I am also new to forum so only realised now you have already written them !