Just like buses - you wait ages for one then two come at once. I had already made arrangements to see Dr Khamashta at the London Bridge Hospital when I got a call last Friday that I could see the visiting rheumie (not a lupus specialist) at the local hospital on the Monday (he only comes up here twice a year). I went, and it was a fairly usual NHS appointment - 15 minutes maximum, not much time to really go over stuff though he did check my range of movement etc, and he did note Livedo reticularis and malar rash. Because I've also been assessed by neurologists and have urology problems he has concluded I have "too-many-doctoritis" - (his words). He has repeated blood tests (including ANA, ENA, anti-centromere, FBS, U & E, C3, C4), but says that even if my ANA has increased and I have some signs of Lupus he still wouldn't diagnose or treat because I don't have significant joint involvement. I'm not sure how significant he wants joint involvement, as at the moment my right shoulder is so bad I have an incredibly limited movement in it and sharp pains if I try doing anything.
Anyway, I still have the appointment set up for the private rheumie at London Bridge Hospital, and I'm getting a bit unsure about it all. I know I have a lot of funny things going on with my body that it has been difficult to sort through, but I really wanted to see if someone can link at least some of them. If being treated for lupus relieves even just a few of my symptoms it will be good, but I don't want to push for a diagnosis of lupus if it isn't that. I suppose I'm starting to have doubts that even a lupus specialist is going to be able to tell me any more than I already know. The starting points for lupus being a possibility are:
- family history of RA, coeliac disease, lupus, sjogrens
- malar rash over at least 10 years
- non specific tiredness and joint pains (without swelling usually) on and off for 20 or more years
- antinuclear 1:40 nucleolar/speckled
- borderline low C3 and C4 (right at the bottom of the range)
- anticardiolipin antibodies positive 8 years ago, normal 2 years ago.
- livedo reticularis
- already have another autoimmune disorder (coeliac disease)
- lots of neuro problems that neuro can't make sense of that are making me progressively more disabled (over last 2-3 years)
So, do I go for the London private neuro or not?
Anyway, I still have the appointment set up for the private rheumie at London Bridge Hospital, and I'm getting a bit unsure about it all. I know I have a lot of funny things going on with my body that it has been difficult to sort through, but I really wanted to see if someone can link at least some of them. If being treated for lupus relieves even just a few of my symptoms it will be good, but I don't want to push for a diagnosis of lupus if it isn't that. I suppose I'm starting to have doubts that even a lupus specialist is going to be able to tell me any more than I already know. The starting points for lupus being a possibility are:
- family history of RA, coeliac disease, lupus, sjogrens
- malar rash over at least 10 years
- non specific tiredness and joint pains (without swelling usually) on and off for 20 or more years
- antinuclear 1:40 nucleolar/speckled
- borderline low C3 and C4 (right at the bottom of the range)
- anticardiolipin antibodies positive 8 years ago, normal 2 years ago.
- livedo reticularis
- already have another autoimmune disorder (coeliac disease)
- lots of neuro problems that neuro can't make sense of that are making me progressively more disabled (over last 2-3 years)
So, do I go for the London private neuro or not?
