I've been meaning to write this since I was seen at RNHRD (known locally as The Min) since I was seen in early May but life got in the way, as it tends to do.
I had taken heed of the advice given by experienced lupies on here and prepared a one page summary of my lupus and associated conditions (Raynaud's, erythromelalgia, IBS, peripheral neuropathy, autonomic dysfunction and inflammatory arthritis) and of our extensive family history of auto-immune conditions. I had also listed the increasing and puzzling weakness that has affected my leg and pelvic muscles (making walking difficult and awkward) as well as weakness in my arms and shoulders and poor balance. These symptoms are currently under investigation by the neurologist at my nearest hospital and I'm listed for muscle biopsy later this month. I declined nerve biopsy, you may not be surprised to hear.
On a separate sheet, I gave my reasons for asking for this tertiary referral (with the agreement of the rheumatologist I have been seeing); what I was hoping to achieve by being seen in a Centre of Excellence ie a fresh look at the lupus and its associated conditions; joint clinics for those associated conditions and a specialist nurse-led telephone advice line.
I finished that sheet with a list of my current medication; results of recent blood test and of other investigations and listed those that I am (still!) waiting for.
My summary was put with my medical notes for the consultant and when I was called in, she had obviously read and digested what I had written, as well as the excellent letter from my GP. The consultant, Dr K, was brisk in her manner but extremely thorough. She asked me some very pertinent questions (some of which no other clinician had asked); listened carefully to my answers as well as courteously including my husband, P, in the process. She asked what were the most troublesome current symptoms and responded helpfully to my cri du coeur about the wretched ulcerating chilblains and the erythromelalgia. What an impossible balancing act those two present: feet too cold-chilblains and ulcers: feet too hot-redness, swelling and almost unbearable burning pain. Scylla and Charybdis, anyone?
She summarised her objective interpretation and checked that she had it right. All good stuff. I was examined and again Dr K. was very systematic and thorough.
At the end of the consultation, we agreed on a plan of action that included increasing my Losartan to see if it would help prevent the formation of new chilblains and increasing the Amitriptyline, titrating it upwards from my current 10mg to help numb the night pain of vasodilation/erythromelalgia. I am to be seen in the joint rheumatology/dermatology clinic in Bath at the end of June and, hopefully on the same day, to have thermography, a cold stress test of my hands and nail-fold capillaroscopy. I will have a follow up appointment with Dr K. at RNHRD in early August.
Dr K. hoped that the appointment was of some benefit and apologised that we "didn't have time to discuss things in more detail" !! I felt that I had been listened to, that a pro-active plan was set out for me and that I had been given sufficient well-directed time, so all in all a very positive experience.
Thanks to all of you who have been so encouraging and helpful since I joined this forum 2 years ago, and supportive when I was feeling particularly rotten.
Tess
London lupus centre
What to expect at first Lupus appointment on Tuesday? 
Yesterday’s appointment at Dermatology 
The difference between my local rheumy and the centre of excellence
