I haven't been on for a while- last post I was waiting for the results of blood tests.
Got tested for - C Reactive Protein - Connective tissue ANA screen - Rheumatoid factor - Coeliac (Tissue transglutaminase IgA)
GP called and said that my ANA came back positive and I've to go down to the surgery on Monday to fill in referral paperwork. I don't have the exact numbers yet.
I'm so relieved that the Ana came back- it's been a struggle getting to the point of a referral and now it's happening it's just wonderful to know the whole thing wasn't just in my head.
I'll be taking my symptoms diary down with me on Monday. Then I guess it's the waiting game.
What do I expect now a referral is happening? What will my rhuemy do? Can it request a particular person? (I have been given the name of a Lupus Rhuemy who it's meant to be great).
I seem to be having another flare up- butterfly rash is back, pain in my body is unbearable at times- especially back and feet, mouth ulcer, exhausted and restless legs. I got a cold five weeks ago and just haven't got over it which didn't help.
I was put on Pregabalin which I wasn't sure was working as I still had some pain but they didn't give me a repeat prescription and I've been off it for a month- I noticed the difference, especially this week with the flare obviously, but I got a prescription sent out today for another 56 pills. Taken the first one and hope it kicks in soon!
Sorry for the rambling.
Hope everyone is doing ok x
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Nat1291
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My advise is to get the a GOOD Rhuemy, I thought a positive ANA was just lupus but ended up having Lupus/Hughes/Sjögren's . I was only diagnosed 2 weeks ago at London Bridge Lupus clinic and saw Dr Lanham and Prof Hughes they were AMAZING and so kind. Getting to the right doc is essential otherwise many docs later your still without the correct care plan or diagnosis.
I'm glad to hear that you got a diagnosis although I imagine it's quite overwhelming to find out you don't just have Lupus.
I suspect i may have Sjorgens too. It's very disquieting to realise so much cold be wrong but reassuring to know help is available.
I was recommended Dr. Christopher Edwards- he specialises in lupus and runs the lupus clinic at Southampton General. He also consults privately at the Spire hospital.
Can I request a referral to him when I see my gp? I think he would be a good fit as I live in Southampton and he is highly respected.
It makes me nervous to know it is taking critical to find someone good.
I've heard of Prof Hughs and the London Bridge clinic. I don't know if my gp would refer me there or how I could get seen? X
There are many GPs who will try to get out of doing it - so read this link carefully so you are sure of your rights. Take the link - preferably printed out if you can. And stand your ground. Take someone with you if youa re very nervous about it - it really seems to concentrate their minds!
Yes your doc can refer you to London Bridge but its a private hospital. Prof Hughes does not see new patients and I was very honoured to have him in my consultation, but Dr Lanham sees all his patients. I would not go anywhere else, I hate docs but these were like being with friends, they are the kindest Medical professionals I have ever seen
I also live in Hampshire and Dr Edwards, (now Professor Edwards) is my lupus rheumatologist. If you Google his title and name you will see his qualifications, posts and training, which was as a Registrar to Professor Hughes at St Thomas'.
I find him very kind, willing to listen and empathetic.
He does have a bit of a waiting list though, so it may be worth going private if you can afford it, (then transferring back to the NHS) or asking your GP to mark your referral as urgent.
I used to travel to St Thomas' to see Dr D'Cruz many years ago, but it was exhausting, especially as the clinics always over ran and the wait for blood tests were over an hour. I thought it was worth it for the care I received and also Dr D'Cruz gave me my diagnosis along with other autoimmune conditions.
However, when I learnt of the Lupus clinic in Southampton it made more sense to go there and I don't regret it at all.
Great news your ANA was positive and your being referred to a Rheumy. He/she will do more specialist blood tests to try to pin down which connective tissue disease you have and recommend treatment. After taking a comprehensive history first of course!. Pregabalin is a nerve painkiller so will only help a part of your flare but will at least help with the wait as it's helped you.
Hello. Getting a positive blood test can lead to a mixed emotions situation cant it!?! I felt relieved that I might be taken seriously at last and someone might help me. As opposed to being treated like a hypochondriac! But there's the overwhelming fear and anxiety of what you are facing. But you are not alone! You've had great advice re Consultant choice. I can't help you there as I live in Wales and we don't get choice! 😢 But please keep us posted and ask us any questions. We all want to help. I'm pleased you keep a diary, I do too. It definitely helps. Good luck!!!
Thank you all for your replies and all the helpful information you've taken the time to give me.
It's so nice to know there is somewhere to come and speak to people who understand. Friends and family are great but they don't understand what it's like forcing yourself through the day and not being able to remember a day that was pain free. They see you getting on with life and the fact that you have no visible disability and can't believe there must be something seriously wrong. Especially when you're only 26.
I got my referral sent today and requested Dr Edwards. The GP said he didn't know if I could specifically request a Rheumatologist but I told him I could- he said he would make a note of my request to be added to my referral and that I would hear back in around 3-4 weeks. Guess I'll just need to wait and see. I really hope they honour my request.
I'll be back once I've heard anything. I will also request a copy of all my blood work so I can tell you what the numbers were.
Good luck with your referral Nat1291 . If you need any tips on preparing for the appointment, we have a blog article which you may find helpful - lupusuk.org.uk/getting-the-...
If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...
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