So confused

[EdinaClouds]

Well, blood tests have come back as clear. Hospital still believe that my symptoms are linked and that I may be showing false negatives. The trouble is though my GP doesn't agree with hospital. The Dr in hospital wants me to come off tramadol and have gabapenten. Reason being she feels this would be better for my as it helps with neurologic pain. Also, she wants me to go on diabetic meds although I am borderline she says it will help my liver which is being problematic. So, go to GP and he disagrees. He took me off tramadol but insisted on me having simple codeine. He also won't give me metformin in liquid form for the diabetis as it is too expensive plus he doesn't believe I need it. He says he will take advice from a colleague and call me on Monday with his conclusions. Oh and should have mentioned that liquid form meds are needed as I have oesophagus dysphagia (a severe problem with swallowing).

I have horrid pain in the soles of my feet and ankles, also in my hands and wrists hands. He totally ignored the pain in my hands and wrists and says the feet pain is plantar fasciitis.

The hospital Dr asked the GP via a letter to send me to a rheumatologists, but GP says I need to see a physiotherapist.

When i left the surgery, i mmediately got in touch with the hospital Dr and asked her to discuss everything with my GP.

It is very unfair to be stuck in the middle. Everything I read about Lupus says that it can take years to diagnose. My numerous symptoms seem to suggest it is a possibility which is what the hospital feel but my GP is adamant that is isn't.

Sorry for the rant.... Just wanted to vent my annoyance with how I'm being treated.

[lupus-support1 Administrator]

This situation is appalling. Your GP is only a GP and not a specialist. Your GP is also showing contempt towards your consultant at the hospital.

You are right to complain to your consultant that she needs to tell the GP what is necessary to help you.

In terms of negative blood tests - you are NOT alone. There are many patients with SLE who are "sero-negative". Sometimes, the blood tests change (they can and do), but specialists are aware that SLE can appear in many forms.

It sounds as if you have a fight on your hands and you are in the middle - this is unacceptable. So too removing tramadol to codeine - codeine does transform into morphine but your consultant believes that you would be better with gabapentin (Neurotin) and I do know patients who take this drug. If you suffer from long term pain (it is with you constantly), you could also discuss with your consultant (I would actually suggest your GP but I don't think this would be helpful) for slow acting pain relief (ie it releases slowly so you can have x24 hour pain relief).

If all else fails, you may have to consider changing your GP - can you see someone else in the practice?

It can take years to diagnose - even with a lupus specialist - especially if you are sero-negative. There are 2 options in the UK.

First, get your GP to refer you to St Thomas' Hospital Lupus Clinic, London and see Professor David D'Cruz.

Second, if you have health insurance or even if you can afford a one off appointment, see Professor Graham RV Hughes at the London Bridge Hospital, London.

Dr Hughes was the consultant rheumatologist and Head of Lupus Research (Rayne Institute) at St Thomas' Hospital and has trained most, if not all, British lupus specialists. He is the best of the best.

Dr D'Cruz is also at the London Bridge Hospital. If you see Dr Hughes (who is patient centred) you can then be "transferred" to see Dr D'Cruz at St Thomas' - they work together, on the NHS. Just take ALL your blood tests with you and if your hospital consultant is helpful, you can ask her for a letter to show Prof. Hughes.

The antiphospholipid antibody (Hughes) syndrome is named after Dr Hughes. I have seen him for many years and can tell you he is an outstanding clinician and a wonderful doctor who treats each patient with compassion and respect.

Prof Hughes: londonlupuscentre.co.uk/abo...

londonlupuscentre.co.uk/

It does sound to me as if you also need psychological support.

With good wishes,

Ros

[EdinaClouds in reply to lupus-support1]

Thank you so much for your very useful reply. GP is being unprofessional but I do have great confidence in the hospital team. I will let you know how things go over the next few weeks.

Kr's

Susie

[lupus-support1 Administrator in reply to EdinaClouds]

Please do Susie - and if you need to talk, please contact me. This process is an anxious time for you but you do not need to feel alone.

Be well!

Ros