TheLupusSite.com banner

1 - 4 of 4 Posts

·
Registered
Joined
·
149 Posts
Discussion Starter #1
Have just got back from a fairly good appointment with GP. I have just received an appointment for a second opinion neuro consultation (in three months), but I was concerned that if this came out not showing anything I'd be back to square one, especially as I am currently having more symptoms that are lupus-like than neurological at the moment. I told GP I really wanted to get to the bottom of the lupus thing once and for all, and I was prepared to go to the London Lupus Hospital privately, but it would be good if I could have some of the blood tests done first to cut the expense a bit. He suggested referring me back to the local Rheumie consultant first, and I have agreed. The next clinic at our local hospital isn't until September, but GP is going to write to rheumie and ask what tests he wants first, so at least something can happen fairly soon. Last time I saw this rheumie he wasn't convinced it wasn't lupus, and did consider starting me on hydroxychloroquine (which he didn't actually do in the end). However I didn't have anything much active happening at the time and the only positive blood was ANA of 1:40 (speckled pattern), which isn't enough to really show anything. I think I might also have had complement in the low end of normal range too.This time I am definitely more sun sensitive with absolute fatigue after being out in it, and much more in the way of achy joints, and a flare of the malar rash. I also have fairly good photos now of what I am sure is livedo reticularis, and my urine has been showing traces of protein for a while. At least now I have the GP onside again it feels much more positive.
 

·
Registered
Joined
·
4,444 Posts
That sounds like a pretty positive turn of events all in all. You definitely do have some more supporting evidence in terms of symptoms now. You should take pictures of your facial rash too... & definitely start avoiding the sun a bit more!

With any luck, the local rheumy will respond quickly with blood tests to order and you'll get those done before your next rheumy appointment (whether private or wait for local clinic).

I certainly hope you find some answers soon and can get on some effective treatment. Good luck with everything and thanks for the update!
 

·
Registered
Joined
·
4,583 Posts
Hi there cemc, you sound like you have a very smart plan in mind. Write down
all your symptoms, the ones that you remembered to tell us here, and any
that you may have forgotten. Oh, and make a copy for yourself and one for the dr. to put into your file. You are off to a good start, and I truly hope that you find
answers to your questions, do let us know.
 

·
Registered
Joined
·
4,369 Posts
Cemc,

Sounds like both you and GP are on top of things - good luck with your neuro appointment!

My sister had just seen a neurologist who has ordered a brain MRI, but on top of that they are also testing lots of auto-immune things of which Lupus is one. So perhaps yours will also do lots of investigations too!

Take care,

Love Lesley
 
1 - 4 of 4 Posts
Top