[cemc]

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?

 

[Katharine]

Hi there,

I'm not up to posting much for the moment but felt I had to reply here.

YES!!!! You do absolutely go for that appointment at the London bridge. Please don't listen to condescending comments from one doc and start doubting yourself. You may not have lupus but you definitely have something and that something needs treating!

We have all been there and felt that incredible self doubt and today it makes me mad that we are often pushed to feel that way by docs, colleagues, even partners...

So PLEASE PLEASE keep that appointment. Once you have some indication of what's going on you should find it a whole lot eaiser for other docs to take you seriously.

hugs :hug:
Katharine

 

[greenhaggis]

Cemc,

If the reason for booking an appointment at London Bridge still exists then GO!

In my opinion the local appointment has not changed anything in your diagnoses. Your symptoms are still there and the same as before this appointment!

Good luck!

Lesley

 

[LolaLola]

I would definitely still go, it is your very BEST chance of getting help.
x Lola

 

[helloos]

Are you going to see a rhemo or neuro privately? I thought you meant rhemo ?

I would definitely go and get that second opinion. My first rhemo wrote in his notes that he thought I had Lupus but would wait for something more severe to happen. Also he told me that I would have to "learn to live" with the pain. Not acceptable. So I went to another rhemo who diagnosed me and started treatment right away.

 

[lazylegs]

Hi,

Keep the appointment. I had to go through so many doctors to finally find the one that could piece the puzzle together. Since the private doctor is a specialist he might pick up on something the other doctor missed.

Take care,
Lazylegs

 

[cemc]

Thanks for all that positivity. Yes, I will go to the private appointment now. Everything has been a bit confused as I have been seen by neuro and rheumie (and skin, and urology) in the last two years, and I still have significant neurological stuff going on as well that the neuros can't get to the bottom of. I just hope that if it clearly isn't lupus, Dr Khamashta can point me in the right direction for who I should be seeing and what investigations might be sensible. My other posting about Dr Khamashta has also got a positive response so I suppose I'm now feeling a lot happier about going all that way for another medical assessment. Though of course I'm going to make the most of my time in London as a tourist too, and catch up with a couple of friends down there too. Think of me on October 9th!
Thanks again everyone. XX