Sticky Blood-Hughes Syndrome Support
8,096 members8,337 posts

Appointment lupus unit at Guy's Hospital and worried

I have an appointment coming up after christmas as The Lupus Unit at Guy's hosptial and am getting stressed about it. I know it will help seeing someone who speclises in the field, but am doubting that i have it and that i could be wasting there time, I have been diagnosed with lupus and sneddon's syndrome by my local neurologist who i have been under for a number of years. who i have faith in and my own doctor (GP) has been good and he was the one who sent the referral am on warfarin, plus other medication i have a lot of the symptons and deep down i know that i have it. I think it because of telling them all the different symptons and flares, and how hard i find it at times, trying to work and cope with it all, if its not one thing its another, i am at the moment dealing with a fracture metatasar which i did in september and taking a long while to heal, waiting now for a mri scan on the foot. This year has been a bad year and just bit sorry for myself. I dont wan the doctors guys to think i am losing the plot or a fruit cake, as once i start telling them different things that have happened and how i am feeling etc.

I know the doctors will probably be fine, i read a lot of good thing regardng the consultant at the lupus centre, probably just me have a turn and getting out of my system. i will let you know after christmas how it goes.

Thanks for letting me ramble.

Best wishes to all.


3 Replies

Hi Donna! A few items:

1) You are worthy. There is no wasting the doctors time. That's what they are there for. You are worth their time.

2) The symptoms of Hughes are all over the place, therefore, many here have been thought of as fruit cakes along the way. You are in good company. :-)

3) Hughes is like climbing a mountain. It takes stamina and a good sense of humor to keep going.

4). We are in the same boat. It's not ranting - it's life with Hughes. If you need to let off steam before Christmas, we are here.


1 like

A suggestion which I found can make doctor appointments less stressful and more profitable?

make and bring with you a bullet point list of symtoms, questions and concerns.

1 like

You have my sympathies! Have APS and a lupus like disorder called non specific connective tissue disease. The fatigue is debilitating, I've had to rest every day from work this week. However, once I had the diagnosis with the tissue disorder, I was put on hydroxy chloroquine which has helped enormously with the joint pain. I'm sure the Lupus centre can reassure you whatever the results, and even if you don't have Lupus, they can give you meds which will improve symptoms. You're not wasting anyone's time, you're important



1 like

You may also like...