Desperation

[Hew2019]

Hi Everyone. I am a 47 year old man. When I was 8 my grandmother (whom I adored) died at the age of 52. She died as a result of undiagnosed Lupus.

I have numerous health conditions, which cause a great deal of ongoing pain and suffering. My GP simply looks at each symptom separately and refer me to the relevant specialist depending on which part of my body hurts. My own research points firmly towards an autoimmune disorder, but when I raise this with my GP he just chuckles and says that they are very hard to diagnose. He did do a blood test which came back negative for Lupus, but this is where the investigation ended. I KNOW something is wrong. I feel ill most of the time. My GP just prescribes Morphine and Codiene and now I'm addicted to opiates. If I had the energy I would feel like climbing a hill with a megaphone and shout " I'M SICK". I know this is probably the wrong forum, but if anyone has any ideas on what I can do to try and get a diagnosis, I would really appreciate it. All the best and stay safe. Hew.

[amc282]

Sorry you don’t feel heard. I know the feeling. Go private to a Rheumy? That is what I had to do. My ANA bloodwork came back with indications of autoimmune, though. Mind you they tested for everything. You will still require a referral from the GP. Also, try seeing a different GP in the practice? If it is a chronic illness, you will then be referred back into the NHS system, I believe. Try to cut back on the morphine/codeine. I am wishing you all the best.

[baba]

"He did do a blood test which came back negative for Lupus,"

There is no single blood test for Lupus.

See,

lupusuk.org.uk/

for good information.

Best wishes

[TeaandToast94]

Sorry you’re having such a frustrating time. I have had my fair share of GPs who don’t like to listen also. Here’s what I would do (and have done when needing to advocate for myself)1. Email your Gp Everything. Then they have it in writing. Create a symptom list, how it affects your life, how long it’s been going on for and relevant family history. Off the back of that call the GP and request a consultation based on your recent email and that you want that linked to your file.

2. Ask to see a different GP for a second opinion

3. If still getting nowhere explain that some bloods can be transient markers of autoimmune issues that come and go. Ask for a referral to rheum.

4. If still no luck then you can raise a formal complaint feeling like your concerns with your health haven’t been addressed adequately and what you ask happens next.

5. If it is within your means, you can refer yourself for private bloods and rheum. As a self-funding patient you don’t need any referral letter, you just pay your own way for the appointment. I am in Kent and our consultants rates for initial consultations are around £260. This does not include any further investigations. Additional bloods depending on what they want can be between £60 (for an autoimmune screen with Nuffield hospital) to a few hundred depending on the tests.

I hope that provides some practical help at least. In the mean time please keep pushing with the GP if you’re not getting anywhere, and here is also a wealth of advice and support if you need it. Take care

[miccika1]

What test for lupus came back negative? Usually you first do a test for autoimmunity (ANA) and only if it comes positive you do a test for a specific autoimmune disease.

[PositiveT]

Hello. I am so sorry you are having an awful time. You are not alone. Sometimes we feel invisible.

Have you thought about keeping a diary and taking that with you either to a private consultant or to your GP? It might help your case. Have you considered asking for a second opinion at your GP? Sometimes a prod like that can make your GP make more investigations?

Keep fighting and although none of us like to the more you persist with the Doctor the more investigations will follow. Keep on telling them your ill.

I wish you all the best.

[Snoopdoggy]

Insist on a second or third opinion if you have too . It took two years to get a positive for SLE Lupus. I was ill throughout my childhood got very ill in my teens. Until after two years got a result. Many years later and life long pain I have had more auto immune diagnosis . Also one big one Could be Hypothyroidism get your thyroid checked but dont be fobbed off. I got told I was Lazy all sorts. Even today I still fight to get heard. Go with your gut you kkow you are unwell . Don't give up . I hope you get the Answers you need.

[WinterSwimmer]

Can you ask your GP to refer you to a rheumatologist?

[CecilyParsley]

Hi Hew, I think most of us here understand your frustration and despair. I think lots of the advice given here is so valid. Ask your surgery for a copy of your blood tests to ascertain what exactly he did test for and what they show. My own GP kept saying your bloods are normal. When I got a copy of the pathology results things were far from normal. When I tackled her she said well what I meant was they are normal for you.Keeping a symptom diary and taking photos of any rashes, swelling etc will help point your GP in the right direction. If he refuses to help see another Doctor. Good luck xx

[Paprika60]

I think your GP is absolutely crazy to prescribe morphine and etc without helping you get to the bottom of it. Time to change GP surgery!!! Get a second or third opinion. Please don't give up. Find a way. After all it is your body, not your GP's and you have to insist. Even if it isn't Lupus, it could be vasculitis or etc. Good luck!